UNITED STATES OF AMERICA ADVISORY COMMITTEE ON HUMAN RADIATION EXPERIMENTS (PUBLIC MEETING) Executive Chambers The Madison Hotel 15th and M Streets, NW Washington, D.C. Thursday, March 16, 1995 8:30 a.m. Advisory Committee Members: RUTH R. FADEN, PH.D., M.P.H. - CHAIR KENNETH R. FEINBERG, J.D. ELI GLATSTEIN, M.D. JAY KATZ, M.D. PATRICIA A. KING, J.D. SUSAN E. LEDERER, PH.D. RUTH MACKLIN, PH.D. LOIS L. NORRIS NANCY L. OLEINICK, PH.D. HENRY D. ROYAL, M.D. MARY ANN STEVENSON, M.D., PH.D. DUNCAN C. THOMAS, PH.D. REED V. TUCKSON, M.D. Staff Members: DAN GUTTMAN ANNA MASTROIANNI LANNY KELLER A G E N D A AGENDA ITEM: PAGE: Statement of Senator Paul D. Wellstone(D-MN.) 180 Chapters 1 and 2 210 Recommendations: Looking Backward 351 Lunch Presentation: The National Research 421 Council/Institute of Medicine Committee for Evaluation of 1950s Air Force Human Health Testing in Alaska Using Radio- isotope Iodine 131 Chester M. Pierce, M.D. Committee Chair Recommendations: Looking Backward 459 Meeting Adjourned P R O C E E D I N G S 8:30 a.m. DR. FADEN: Good morning, everyone. I was just explaining to our distinguished visitor that we tend to kind of take a little while to settle in in the morning, but we're very fortunate and honored to have Senator Wellstone with us this morning, and knowing his schedule, we should start as promptly as we possibly can. So, with apologies to the Senator for the fact that some of us are still sipping a cup of coffee, if you'll forgive us, we're very honored that you've taken the time out of your busy schedule to speak with us, and we're looking forward to your comments. Statement of Senator Paul D. Wellstone SENATOR WELLSTONE: Thank you very much, Dr. Faden, and to Dan Guttman and to all the members of the advisory committee and guests, I can't tell you how pleased I am to be here, and I really honor your work. I'd like to thank Oscar Rosen, who's the national commander of the National Association of Atomic Veterans, for being here, and at the risk of -- I am an academic by background, and I would not want you to believe that this analysis is not meant to be rigorous, and it's very rare that I read from a prepared statement, but I want to try and do it with feeling, but I want to make sure that I get the words right, but I do want to dedicate this testimony to Smokey Parrish and Eugene Toronto, and I know that sounds very much like a politician-type of thing to do, but it really isn't. They have been -- if I had to pick two areas, since I've been in the Senate, where I just have kind of, I guess, developed a real strong emotional commitment above and beyond intellectual and policy and all the rest, one is really with Sheila, my wife, and it's in the area of domestic violence, and our teachers have been families that have gone through this in Minnesota, and then this whole question of atomic veterans, My teachers have been some of the atomic veterans in Minnesota. Your work is of extraordinary importance, not only to those who were the subjects of radiation experiments, whose trust was violated by their own government, but to all Americans who believe that it is the primary responsibility of government to deal honestly and justly with its people and, most important, to tell the truth to and recommend remedies, including compensation, for those of its citizens it has wronged over a 50-year period. I just think -- now I'm already deviating from written text -- that your work is so important because I really believe that in this kind of time where people have such skepticism, sometimes downright disillusionment and anger, in many ways, your mandate and what you're about, I think, will help reinforce some of that faith in the government. This is an extremely important mission that you have. Experiments which jeopardize the health of countless Americans without free or informed consent cannot be justified, not even by purported imperativeness of national security in the Cold War, and we know that was part of what was all about in this era. At the outset, I want to commend the committee for its courage in taking on tasks that are crucial if your work is to have a significant impact on the subjects of experiments who were placed at risk without being accorded any semblance of informed consent and sometimes without any knowledge of the experiment's purposes and protocols. First and foremost, I want to underscore and urge you to stick with the advisory committee's decision to include in your inquiry atomic veterans, who were subjects of human radiation experiments performed in the course of atmospheric nuclear tests. In my view, atomic veterans are not only the most neglected group of veterans, but a group that has seldom been accorded even a semblance of justice over the past 50 years. Marty Gensler, who is with me, who's done really magnificent work in this area, I think will agree that, you know, the more you talk to the veterans, the more certain you are of that fact. Rarely have I come across a group of people who I think have waited longer for some kind of justice, you know, justice delayed is justice denied. I hope you will agree with me that it's about time that the government, which placed these patriotic veterans in harm's way, paid its long overdue debt to them. Without mincing words, let me state categorically that I believe the view of most atomic veterans, that the government they trusted to take every possible measure to guarantee their safety, in fact treated them like guinea pigs in uniform. I believe that that view is hardly an exaggeration. I wish I could say otherwise. In the last year, I've had frequent meetings with Minnesota atomic veterans, who are members of the United States Army's 216th Chemical Services Company, and participated in a series of atmospheric nuclear tests in Nevada in 1952 called Operation Tumbler Snapper. With very good reason, they now call themselves the Forgotten 216th. They believed their government's assurances that it would protect them against any harm, but they're now convinced that they were used as guinea pigs with no concern shown for their safety. No concern shown for their safety. Many were sent to measure fall-out. Maybe we could put ourselves in their shoes for a moment. At or near ground zero, immediately after a nuclear bomb blast, encountering radiation so high, that their geiger counters literally went off the scale while they inhaled and ingested radioactive particles. They were given little or no protection. Sometimes even lacking film badges to measure their exposure to radiation, and were not informed, were not informed of the dangers they faced. Moreover, they were sworn to secrecy about their participation in nuclear tests, even denied access to their own service health records, and provided with no follow-up health care or even medical monitoring. Many members of the Forgotten 216th have already died, often of cancer. Some of the men became sterile after participating in Tumbler Snapper. Their wives experienced multiple stillbirths and miscarriages. In some cases, after normal deliveries had occurred, prior to their spouse's exposure to radiation. Many of their children and even grandchildren are suffering from serious illnesses and birth defects, conditions that had never occurred previously in the family of either parent. I'm certain that it will be of interest to this committee that a Defense Nuclear Agency fact sheet on Operation Tumbler Snapper points out that during the nuclear blast, DOD personnel were involved in numerous, and I quote, "test group experiments". Troops were also subject to psychological experiments, at least in part at determining their reactions to nuclear detonations. There seems little doubt that Minnesotans and other veterans who participated in Tumbler Snapper were subjects of radiation experiments. That is precisely what happened. I hope you won't feel that I'm being presumptuous, but I urge you to give these Minnesota veterans and others, I'm not speaking just for Minnesota veterans, atomic veterans throughout the nation, the benefit of the doubt when deciding on remedies. In my view, there is no question they deserve compensation from the United States Government. Documents you have revealed indicate that the Veterans Administration, which for four decades denied veterans' claims that they had developed radiation-linked testing, set up a secret program to deal with the very problems the existence of which they later denied. As you know, there's also fragmentary but I think persuasive evidence, dating back to 1946, that ranking VA, other civilian and military personnel acted to minimize the possibility that claims from atomic veterans would be approved and to conceal from the public the hazards associated with exposure to radiation. I wish this was not the history, but it is. Unfortunately, the United States Government has only rarely and belatedly given these, the most neglected of our veterans, the benefit of the doubt. After 50 years, it's about time that atomic veterans were treated justly and humanely by the government they served patriotically and without question, and I will do all that I can to see to it that they are, and I know that sounds like again kind of politician's words or speech, but I really mean it. I just can't let go of this. The cover of each issue of the National Association of Atomic Veterans' newsletters contains the following statement, "The Atomic Veteran seeks no special favor, simply justice." Please join me in ensuring that these patriotic veterans at long last receive the justice due them, and that men like those in the Forgotten 216th are never again forgotten. Might be of some interest to you that at my initiative, the National Academy of Sciences is currently determining whether it would be feasible to do a study of the health problems of the families. I also want to focus on the families of atomic veterans. Genetic illnesses and defects in their children and grandchildren and adverse pregnancy outcomes in their spouses. Let me just emphasize this. Such a study of the health effects on the families has never been done before, even though atomic veterans and their families have been pressing for it for many years. Not even one health study. Ignorance, Gunnar Myrdahl once said, ignorance is never random. Sometimes we don't know what we don't want to know. Not even one study, and these vets over and over and over again have been asking for such a study. Atomic veterans have great concern that their exposure to radiation may be affecting the health of their families and generations yet unborn. I'm committed to fighting for the funding of a full-scale study of such health effects should the National Academy of Sciences find it to be feasible. Let me, if you would permit, to just take a few more minutes to talk about one other area that I think is directly related to your work, and if that is all right. DR. FADEN: Of course. SENATOR WELLSTONE: I promise not to filibuster. The remedies you recommend in your final report not only may benefit Americans hurt by radiation experiments, but also might have some applicability, and that's why I think the sort of work you're doing is of such significance, I know it creates a tremendous amount of pressure on you, but I really think it is just extremely -- the ramifications and the consequences of this committee and what you're about are just extremely important, might also have applicability to other Americans harmed by Cold War era experiments. One of the main reasons I believe that the advisory committee decision to address the thorny question of remedies is so important is that it is quite possible that the recommendations you make will not only have a major impact on the victims of radiation experiments but also may provide a tool for indemnifying those harmed by Cold War era experiments unrelated to radiation but still the same issue, the same principles, the same question of accountability. Among those who might benefit indirectly but significantly from your work are the countless Minnesotans who, without their knowledge, were exposed to U.S. Army spraying of zinc cadmium sulfide in 1953, even though as early as 1932, a study concluded that cadmium, and I quote, "causes pathological changes". While the Army told local officials in Minneapolis that the compound was completely harmless, again in quotes, inhaling or ingesting cadmium compounds has long been regarded as posing serious health hazards, such as liver and kidney disease and, more recently, the compounds have been viewed as carcinogens. The Army has defended the zinc cadmium sulfide test as necessary both to explore the dispersal of chemical warfare agents and to develop knowledge about biological warfare, but told Minneapolis officials going back then only that the spraying was related to smoke screen studies. In addition to Minneapolis, St. Louis, Corpus Christi, and Winnipeg, were subject to spraying in 1953, while 239 cities coast to coast were exposed to zinc cadmium sulfide in 1957 and 1958. The areas sprayed in Minneapolis included both an elementary school and a university dormitory. Former students of the elementary school have come forward with chilling accounts of serious health problems affecting both them and their children, ranging from sterility to serious birth defects in their children to early cancers. It is sad and ironic to say the least that about the same time the Army subjected men, women and children in Minneapolis to zinc cadmium sulfide spraying without their knowledge or consent, the then Secretary of Defense, and you know this history well, Charles Wilson, was issuing a Top Secret memo to his service secretaries on protecting the rights of volunteers in experiments, very much to his credit. To his credit, Wilson based his memo on the Nuremberg principles, which means something to me as an American Jew. Without going into the details of the memo, which I know you're familiar with, let me just mention a couple of the provisions it contains that are particularly relevant to the Army spraying of zinc cadmium sulfide over populated areas. Wilson's memo stressed that in all DOD experiments, and I quote, "the voluntary consent of the human subject is absolutely essential", and the experiment "should be of such as to yield fruitful results for the good of society unprocurable by other methods or means of study and not random and unnecessary in nature". By any standard, neither of these criteria were met. In the Minnesota spraying at least, the Army did nothing to obtain voluntary consent. It did nothing to obtain voluntary consent, and in the words of one of the former students of the Minneapolis elementary school that was sprayed, "this was a planned biological warfare test done intentionally by the Army in secret. We did not volunteer for it, neither did our parents or our school. No one volunteered for it. And if anybody had been told, all of us, I'm now a parent and a grandparent, no, we would not have given such consent." Incidentally, this woman thinks that many of her former neighbors and classmates have had an unusual number of miscarriages, still births and children with disabilities. Both she and her sister are sterile. As to the Wilson memo's insistence that human subject experiments produce results for the good of society, allow me to briefly cite the comments of Matthew Masselon, Professor of Natural Sciences at Harvard, in response to Army claims that the zinc cadmium sulfide experience proved useful in later scientific studies of how pollutants move in urban air and when they might pose health problems, and I quote from Professor Masselson, "an enormous amount of research was done," said Masselson," and it has had essentially no consequence in the published scientific literature on how pesticides diffuse in the atmosphere." While I know your committee is carefully examining the question of why the Wilson guidelines, based on the Nuremberg ethos, did not percolate down to field units for many years, permit me to observe that "top-secret stamp", and as you well know, it was a top-secret stamp, "on the memo virtually guaranteed that its dissemination would be limited and delayed." I'm sure that at least some of you will agree with me that the very act of classifying information on human subject experiments makes it difficult, if not impossible, to ensure that informed consent and other protections would be guaranteed to participants in such experiments. In this case, sunlight may not only be the best disinfectant, but the only disinfectant likely to work. I'm pleased to report that as a result of the joint efforts of Congressman Sabo and me, the Congress last year earmarked $1 million for the National Academy of Science study of the health effects of zinc cadmium sulfide spraying, including possible birth defects. Should the study find that there were serious adverse health effects, I plan to press for legislation providing appropriate compensation to those affected. The last part and very briefly. Finally, the best justification I've seen for Charles E. Wilson's memo use of the Nuremberg principles to protect subjects of experiments was articulated by Supreme Court Justice Sandra Day O'Connor, writing a dissenting opinion in United States v. Stanley in 1987. James Stanley, an Army serviceman, volunteered to test the effectiveness of protective clothing and equipment against chemical warfare in 1958. In the process, he unknowingly received LSD as a part of an Army study to determine the effects of the drug on human and suffered severe health problems for years afterwards. While the Supreme Court has interpreted the so-called Ferris Doctrine to mean that soldiers "injured in the course of activity incident to service may not sue the government for compensation", Justice O'Connor in her dissenting opinion in the United States v. Stanley stated the Ferris Doctrine, and I quote, "surely cannot insulate defendants from liability for deliberate and calculated exposure of otherwise healthy military personnel to medical experimentation without their consent outside of any combat, combat training or military exigency." But even more important, Justice O'Connor went on to comment on the Nuremberg principles, stressing that voluntary consent of a human subject is absolutely essential, even for the United States military, and astutely observed that after all, it was the United States military who "played an instrumental role in the criminal prosecution of Nazi officials who experimented with human beings" during World War II. If the principle of voluntary consent is violated, Justice O'Connor emphasized, the very least society can do is to see to it that the victims are compensated as best they can be by the perpetrators, and I would argue that since the United States played a vital role in the formulation of the Nuremberg principles, one that I, as I said to you earlier, as an American Jew am particularly proud of, it is incumbent not only on our leaders but on all Americans to ensure that we never again violate these principles. That's part of what your work is surely all about. Needless to say, this is an area in which your committee has a vital role to play. In this connection, I'd like to applaud you for your bold decision to examine current human radiation research and make recommendations regarding future government policies. It's crucial that you evaluate the adequacy of current procedures and practices to protect the rights and interests of subjects of radiation research. Above all, the committee must determine whether sufficient safeguards now exist to ensure that the outrages committed in connection with some Cold War experiments cannot be repeated. I can assure you that I, along with my Senate colleagues, will carefully review your findings, particularly any recommendations you have to make, for strengthening the existing safeguards, particularly any recommendations you make for strengthening existing safeguards. No American should ever have to fear that the government will once again treat its citizens as mere guinea pigs. Let me just repeat that. No American should ever have to fear that the government will once again treat its citizens as mere guinea pigs. Thank you for allowing me to share my views with you. DR. FADEN: Thank you very much, Senator Wellstone. We appreciate it, and we're honored by your flattering comments and inspired by your call for us to work harder. Are there questions for the Senator or comments? Duncan? DR. THOMAS: Senator, I would like to ask you about two areas which you developed that are near and dear to my thoughts at least. As you know, we have focused our investigation of the atomic veterans story primarily on those aspects of the experiences of the atomic veterans that were experimental in nature, and we've felt somewhat constrained by the language in our charter emphasizing the word "experiment" in doing so. But we've recognized, also, that in many ways, the experience of the tens of thousands of veterans who were not part of the specific experiments that were -- that we've been looking at were in many ways very similar, and we've had a hard time drawing a dividing line between the two. I was particularly intrigued by your comment about the DOD document from Tumbler Snapper, which referred to test group experiments, and was wondering, first, as a point of detail, whether you know anything more about the nature of the specific experiments that were referred to in that document, and, second, what your general take is on whether we're doing the right thing in terms of trying to make the distinction between those atomic veterans that were subject to specific biomedical experiments and the very large number of others that had similar experiences but were not part of an organized bio-medical research program. SENATOR WELLSTONE: Let me take the A part and ask Marty to respond to the B part as to the specifics of Tumbler Snapper. I believe that by definition, I think it would be a mistake to just focus on what were narrowly described as medical experiments or specifically conducted experiments because I think by definition, regardless of the language used, and that was part of the problem, there was no openness, there was no accountability, there were others who were not -- who were not supposed -- who were not defined as officially participating in experiments who were in fact participating in experiments. No question about it. The atomic vets fit that, and, so, I hope you will have a more expansive definition. I think you have to. Otherwise, you're going to have a whole group of people who one more time are going to be left out, and I don't think we can do that. DR. THOMAS: You understand, though, that that's a considerable -- SENATOR WELLSTONE: I understand. DR. THOMAS: A very liberal interpretation of our charter? SENATOR WELLSTONE: I understand. I also -- I also believe that -- well, two points. I think that it is your job -- first, I don't want to be presumptuous. I argue -- I told you how much I honor your work. But it seems to me that -- I'm thinking out loud and thinking out loud is always dangerous, but it's a good way of -- I was a teacher. That's what teaching is, thinking out loud. You know, quite often, quite often in the Senate -- I've learned this now that I'm a veteran of four and a half years, you know, I know it all -- quite often in the Senate, we will, as we're working on legislation, even before we decide what would be the most fair and just and desirable thing to do, we will move back from that, arguing that it's not feasible, and then we come up with a very definite narrow definition of what we finally present, based upon a sort of accommodation to somebody's definition of what's feasible, what isn't. And I think in your case, albeit you have to be very rigorous, I would urge you to go forward, to just sort of think about what all this means in human terms, to sort of understand full well that these men were in fact in an experiment. There's no question about it. I mean they were sent in harm's way. Nobody said anything about it. The language of experiment is used, and even if they were not officially classified within the existing definition you have, I think you have to include such veterans, and if somebody says, well, this is going to mean, you know, this means more dollars, this is a bigger -- this is going to be a bigger problem in terms of what the United States Government has to do, so be it. So be it. Your mission is to sort of -- your mission is to lay it out as boldly and as directly for people in the country as possible. Marty? DR. GENSLER: I guess you're interested in what DNA had to say about Tumbler Snapper. We have much more direct evidence. Half the members of the 216th were from Minnesota. They have an alumni association. They meet regularly. They can certainly tell you what went on there, and they've told us. They in fact were sent into ground zero. Smokey Parrish, as the Senator mentioned, is a Republican in a small town in Northern Minnesota called Hackensack, not New Jersey but Minnesota, and he certainly can tell you the ground rules for the experiments and his own experiences. Just to give you an illustration, he was asked to clear out a mine that was close to ground zero. He knew the people who owned the small mine. It was a family. I think their names were the Grooms. Anyway, he went out. He knew them, to help them move out. While he was waiting for them, he drank some water from the tap. Mr. Groom noticed that. He said, "You shouldn't have done that, Smokey." He said, "Why?" He says, "Well, we usually clean out our water tower a couple of times a week, and there have been blasts." They were right near where the blasts were detonated. "And the reason we clean it out is because we get these particles in there." Well, Smokey drank a whole glass of water, full of those particles. He -- after he was warned, he looked at another glass of water. When he tried to press claims with the VA, that's disregarded. I happen to know that claims he's pursuing right now, you know, 45 years later, the DNA didn't even attempt an internal dose reconstruction. It was clear from the case he made, the case he made to Paul in public forum and in private that he in fact had ingested radionuclides. His case is not unusual, and I think -- actually, I would invite you to speak with him and with Eugene Toronto. They're essentially the people who lead the remnants of the 216th Chemical Service Company. I'm sure they'd be happy to speak with you on the phone. DR. THOMAS: I suspect -- DR. GENSLER: Oscar and his outfit. We have a Minnesota chapter, and I think they have similar stories to tell. DR. THOMAS: I suspect we may already have the DNA document -- the DOD document that you referred to, but if not, I think it would be a good idea if you could provide it to us. SENATOR WELLSTONE: We would be pleased to do that. DR. THOMAS: We'd certainly welcome any other material you could provide us about experiences. SENATOR WELLSTONE: We would be pleased to -- Madam Chair, we would be pleased to provide you with not only that document but also with just some existing testimony from individuals in case you want to do any follow-up, and I'll tell you something, for them and, Oscar, I think you would agree with me, they would be -- and I know you could say, well, we don't want to build up expectations, but by the very fact that you would be interested and that you would be willing to take a look at some of the documents, that would mean a tremendous amount to them because they have felt very shut out for a long time. DR. GENSLER: Paul, I'd like to just make one addition. Smokey Parrish contacted us after Hazel O'Leary's revelations concerning radiation experiments. It was the first time he had broken silence in probably 40 years and went public, contacted our office in St. Paul. Although, you know, they recognize that your committee would not necessarily be dealing with them, it was -- what you represent collectively is the only glimmer of light there is in this area in terms of any reasonable redress. DR. FADEN: Duncan, you have a follow-up, and then we have some other people waiting. DR. THOMAS: I want to raise another issue regarding intentional releases, but if some of the other people want to talk more about the common threats, perhaps I can hold my question. DR. FADEN: Go ahead and ask it. DR. THOMAS: The other question has to do with you raised the applicability of the Wilson memo to the zinc cadmium sulfide experiments, and it touches on a broader issue, which we have thought quite a bit about as well, and that's the applicability -- well, the ethical criteria for the conduct of intentional releases. A strict reading of the -- a strict applicability -- application of the Wilson criteria, the Nuremberg criteria, in short, to the whole class of intentional releases would basically mean that one could never do any intentional release of any form, and it isn't evident to us that that was ever the intention of either the framers of the Nuremberg Code or Secretary Wilson. It's clear that we need some sort of criteria for judging when it's appropriate to conduct some sort of an intentional release, but it isn't evident to me that the informed consent of the entire exposed population of every individual in that population is necessarily the right criteria. I wonder if you have any further thoughts as to how one should go about this. It seems to me this is something that needs to be worked through in the democratic process, and we rely upon our elected and appointed leaders to make these decisions on behalf of the better good of society as a whole. SENATOR WELLSTONE: Well, I will be in a position to, I think, probably make yet a better decision after looking at your recommendations, but I understand where you're heading with this. I mean it does seem to me that while on the one hand, you can raise questions about the broad applicability of it and where you draw the line, the other side of the continuum is when people are basically lied to, and that's really -- that's exactly what happened in Minnesota, and it does strike me that there's got to be -- there has to at least be some balance here where you simply don't set up a standard which just sort of makes it impossible to move forward, but by the same token, there has to be some directness and some truthfulness with people, so that people have some understanding of what the effect is going to be on them. But I am not -- I'm sorry, I'm not -- I am being general because I have not had a chance to think through that question nearly as deeply as you have, and when I've concluded my testimony, I'm not trying to be clever, and I said that as a Senator. I mean I came here today to just without a doubt, I came here today unabashedly to advocate atomic veterans and to talk about what happened and to also talk about the experiences of zinc cadmium spraying. That's very important, because I think the recommendations you make, even though that was not a radiation experiment, apply as well, as I said, to the whole question of how we deal with future indemnity for people or indemnity for such people. But I -- when I concluded by saying that as a Senator, I mean that's one of the reasons I'm here, I'm extremely interested in the work of this committee, and I really want to carefully review what you recommend. I meant that, and I would be pleased to give a better response when I have a chance, rather than being glib, to think through deeply the question you raised. DR. THOMAS: It's a tough one, and I certainly do appreciate your thoughts. DR. FADEN: Can you get one more question? SENATOR WELLSTONE: Sure. Yeah. DR. FADEN: We appreciate the time. We should have been more mindful of it. Ken, a quickie. MR. FEINBERG: Senator, I'm intrigued as to what the Senate is doing about all of this. The Senate has -- the Congress has enacted legislation, remedial legislation, to help atomic vets. It's enacted remedial legislation to help Agent Orange vets, rancher, down-winders, uranium miners, black lung victims, vaccine users, and the critics of a lot of this legislation, including the atomic vet critics, would say that the legislation is just too restrictive in its presumptions, in the hoops that atomic vets have to go through to be deemed eligible, and I'm just curious as to what the United States Senate is doing in this area to try and liberalize eligibility criteria and presumptions to make it easier for atomic vets to recover under legislation that was enacted before you were in the U.S. Senate. So, is there anything you can tell us in that score? SENATOR WELLSTONE: Yeah. I'll give you a one-two, Marty, and then I follow you. DR. GENSLER: As to the last part of your comments, we tried to pass various legislation. Paul, and Nine other U.S. Senators, wrote to Jesse Brown, the Secretary of Veterans Affairs, essentially saying that this business of two lists, a regulatory list and a statutory list, which overlapped to the tune of about 70 percent, makes absolutely no sense. Frankly, our questions, by our, I mean 10 U.S. Senators, were never really addressed. A similar letter was written by Congressman Lane Evans on the House side that had 55 signatures, got the same reply we got, which was essentially a bureaucratic description of the existing system. It didn't answer any of the questions we broached. But we're continuing to pursue in this area an effort to get the VA to look at their own system, and, if need be, to press for legislation that makes it far easier or at least makes it possible in some cases for vets to have -- to be presumptively service connected. I mean basically, before 1982, there were perhaps 12 cases that were approved by the VA for compensation. In the last 10 years, their approval rate is about nine percent, and often these guys, as you know, don't even have access to their records, and the Navy kept two sets of records. So, if you're going to participate in any nuclear test, you had a chest x-ray and you had a physical. That file was classified. I don't know if it's still classified. Do you know that, Dan? MR. GUTTMAN: Actually, Captain George has been helping us get that public, some of that stuff. DR. GENSLER: Is it classified? I'm asking a question. MR. GUTTMAN: I decline to answer on the grounds that I may not be correct. DR. GENSLER: Fifth Amendment lawyer. MR. GUTTMAN: I'd like to study that matter, but I see Captain George sitting back there, and we'd be pleased to discuss it with you and the Senator. SENATOR WELLSTONE: And the Part B answer is that we have actually been -- last year, one of the reasons that we now at least have the Academy looking at just the health effects on families, as I said, I was bringing an amendment to the Floor, and then that became a negotiation in the agreement. I have made it clear that I'm going to bring this to the Floor of the Senate because -- but we've been pressing hard on a lot of fronts with the Secretary, and we're pressing further, with -- on Veterans Committee, we have held some hearings, which, for really the first -- DR. GENSLER: Actually families of atomic veterans. SENATOR WELLSTONE: Which was the first time that happened. I'm now pressing very hard to get on that committee, Veterans Committee. I mean I just don't want to let go of this. I want to really keep pursuing it, and we are also working on legislative initiatives. I think your work -- I mean your mandate is not to help me, but I have to tell you that clearly, you know, the final set of recommendations that you come up with, I think, will help those of us who want to respond to this more strongly legislatively in other ways. I would like to thank you very much for letting me -- it was a long testimony, and I really appreciate the fact that you stayed. I was a teacher. So, I'm real sensitive as to whether anybody is sleeping, you know. I didn't see anybody sleeping. I thought the questions were very -- some of them very difficult, and I promise to continue to think and to think deeply about this, and to not just testify, be gone, never see you again, you know, this is not symbolic politics for me. I just care fiercely about these questions, and I look forward to working with you. Thank you so much for letting me here. DR. FADEN: Thank you very much. SENATOR WELLSTONE: I appreciate it. DR. FADEN: You're welcome. Thank you. (Applause) Chapters 1 and 2 DR. FADEN: Okay. All right. Okay. Group, in case we thought nobody cared, all right, that was very nice. Okay. We need to start working. Good morning for those people who came later. We have the day set aside to begin to debate and examine recommendations, draft, very draft and very preliminary recommendations that have been pulled together from suggestions from committee members and work of the subcommittees and committee and full committee and from the staff. But one of the things we had originally planned to do yesterday, that we didn't do because we ran out of time, was spend some time on Chapters 1 and 2, which you all were asked to read. It hadn't been given in advance. So, I thought maybe a way to get started would be to do that, sort of get warmed up, and then move into the proposed draft and recommendations, if that's agreeable. So, we might spend perhaps an hour, max, on the two recommendations, the two chapters, have a coffee break, and then move into retrospective recommendations. Prospective recommendations tomorrow. Okay. Chapter -- in order, Dan? Chapters 1 and 2. MR. GUTTMAN: I just can't help but remark, the document that we released yesterday that was in the New York Times, as I recall, one of the items it mentioned was that they were afraid they were going to endanger the Groom's Mine, and I guess we now know what the Groom's Mine was. DR. FADEN: I don't know what you're talking about. MR. GUTTMAN: When Senator Wellstone was talking about -- Marty Gensler about the vet in Minnesota who drank the water from the mine, Mr. Grooms, and the document released yesterday talked about the potential endangering of the Groom's Mine. So, it's one of those things. DR. FADEN: Okay. We are ready to start. Ruth? DR. MACKLIN: Since I thought these chapters were so good as almost all the work that the staff has done, I feel very hesitant to make any kind of criticism, but I think that's what we're here for. DR. FADEN: Exactly. That's what we're here for. DR. MACKLIN: What we always fail to say and should say is how good they are before we launch into the criticisms. Okay. I had a -- this is a global comment, essentially about Chapter 1, Part 1, or Part 1, Chapter 1. Sorry. And it's that it seems to get too long to get -- take too long to get started. It moves back and forth between substance, which is intriguing and pulling the reader in, and talking about the committee's search and the committee's work, and then promising what's coming in later chapters. Well, I mean that's a good thing for an introductory chapter to do, but I had the sense that as I got maybe two-thirds of the way through, it was still making promises and pointing the way. So, I think some of it should be condensed. I mean in much the same way that we talk about a film that we're unwilling to edit a little bit, and also I think it needs a little more -- I don't know how I should put it -- a decision whether to focus on the substance to draw the reader in or whether the talk about what the committee's process has done. It is doing both, and maybe that's appropriate, but I found myself sort of moving back and forth and trying to step back and think what a naive reader might think, says hey, I'm interested in this story, I mean what's all this stuff about the committee and the boxes and -- I mean I can understand why it's there. So, that was just -- it's an impressionistic comment, but in any case, I think even if both purposes are there, I think it takes a little too long to get to that point. So, I'm sorry. MR. GUTTMAN: We have our expert naive reader sitting in back of you. DR. FADEN: Henry? We're on Chapter 1 now, then we'll do Chapter 2. DR. ROYAL: The opening paragraphs spend a lot of time describing the Nuremberg trial, and the fact that doctors were condemned to death for the experiments that were done. I wonder whether or not as an opening paragraph, that doesn't do two things which are undesirable. The first is it emphasizes the similarities between the Nazi experiments and the human radiation experiments that we're looking at. It does nothing to help distinguish what was different. I would be very troubled if a committee like this was not able to clearly define for the public what the similarities were and what the differences were between what the Nazis did and what American doctors did. The second thing is stating what the punishment was for the Nazi doctors might raise unrealistic expectations. MR. GUTTMAN: Well, a lot of them became U.S. citizens in Operation Paper Clip. May I respond? DR. FADEN: Yes. MR. GUTTMAN: We thought -- I don't think there's ever been a public committee to discuss an opening sentence in it, but this is really remarkable openness experience. But one of the difficulties in thinking about that is, I guess, at least our thinking, which is where this discussion is, that the Nuremberg is sort of the center question. You know, what was it about, and how did it relate to the American experience, and if that is the way you're going to start, then the question is what does the lay reader have to know about it, and, you know, we originally -- I originally thought that anything that you say about Nuremberg is by definition going to taint whatever comes after that. So, then do you kind of sanitize it and sort of not say what the Nazi doctors did, and the reader is going to say, well, you know, gee, what was this all about, and, so, you get that -- that's one kind of question. In fact, what we try to do, I've had this discussion -- we've had this discussion internally. Sarah said -- Sarah Flynn is working with it, you have to have more about exactly what happened in that -- in the concentration camps, and I said certainly not up front because that will destroy and taint. We'll have chapters back on towards the middle where people are now much more comfortable with what happened in the American experience. But, basically, the answer is, Henry, yeah, obviously the whole report is addressed to answering that question, that we will have findings, every one of you, we all have our own -- this is why this is profoundly different in the United States from what happened there. The question is where do you assert that, and, you know, how do you set the -- it's not that that has to -- that's the essence of what the report is, whether the Nazi situation is in any way relevant. DR. ROYAL: I would think that as a minimum, -- MR. GUTTMAN: Yeah. DR. ROYAL: -- that in the opening paragraphs, -- MR. GUTTMAN: Yeah. DR. ROYAL: -- the statement would be made that one of the purposes of this report is to try to clearly define what the similarities and differences were -- MR. GUTTMAN: Yes. Okay. DR. ROYAL: -- among these experiments, and not leave that in open unanswered question until later on in the report, not to -- so that we don't mislead people into saying that these were similar on many levels. DR. FADEN: I just want to make it clear very early on that one of the purposes of the report is to clarify where there were similarities and where there were differences. So, the question doesn't go unsaid until later. DR. KATZ: This would be promising too much. That would be such an inordinate task. I've been trying to do that in my own work, you know, to delineate the similarities and differences between the Nazi experiments and the Cold War and other kinds of experiments. I doubt whether we should make that promise in case we can't deliver. MR. GUTTMAN: Can I ask a clarifying question? Are you saying, Henry, clearly we should signal the reader that we're not going to go say this was Nazi Germany, but is that by saying we're going to try to distinguish it or to actually give the ways -- give the findings up front -- Jay is saying -- DR. OLEINICK: But you have to make some statement. I mean I, too, was struck by that opening, which it needs somewhere in here to say there were many differences, and, you know, they will come out, but I mean one, it seems to me ought to be stated perhaps somewhere in the chapter, I'm not sure whether immediate or maybe later on, just that you had the contrast between what was essentially pure evil to doctors who had -- were trying to perform, you know, good tasks at one point. I mean something to that effect. MR. GUTTMAN: Can I just respond to that? This is a difficult -- these are the most profound kind of conversations, but in my naive lay reading of Dr. Robert Lifton's book, "The Nazi Doctors", what struck me in that book is that -- and Ruth -- and Jay -- Ruth Macklin -- is that even in that setting, you don't find people saying I'm going to go kill people and do evil. That -- what he talks about is a biography. It's the rationalization of -- that the difficulty is when people under the name of doing good -- Jay might want to comment -- that's why Jay -- DR. KATZ: Of course, and that increases the complexity, but in response to what Henry and Nancy says, also, and you know, all kinds of questions about Chapter 1, and I'm sure all of them had questions, but I was really intrigued by this, the way the chapter was written by you. I have a few minor suggestions to make. In reading it, and I'm a member of this committee, I want to know what's going to happen in subsequent chapters. It drew me in, and I didn't mind, you know, into what Henry says, of course, is important, but these were things to come. We can't have everything in one chapter, and I was quite pleased with the way it was written and organized by you for these reasons. So, I understand what Henry is concerned about. MR. GUTTMAN: Right. And that's a question, is there a way of balancing, you know, by saying, look, we're not saying don't assume for a second that this was Nazi Germany without getting into a full-blown this is how all the things were different. DR. OLEINICK: I think you need to because sort of like Jay reads it, I mean he already knows, as much as anybody knows on this subject, Jay knows, but the average reader, of course, is not going to have Jay's background. DR. FADEN: Now, I think people should not be shy here. I've got Susan, Pat and Ruth that I've sort of seen signaling wanting to speak, and again just remember, if you feel your comment is exactly on point, leap in; otherwise, I'm going to start pointing my finger. So, I've got Susan, Pat and Ruth. DR. LEDERER: I guess what I found troubling about the opening paragraph was that it sets up the inference that the Nazi experiments are the standard against which we are judging the radiation experiments. So, I don't have any problem with it being in the chapter, but I think it's problematic that it's the opening few paragraphs. I guess I'd prefer to start with Eileen Welsome, and then come back to the Nuremberg, unless you want the inference to be there from the very beginning, that American researchers were the American equivalent of Nazi doctors. MR. GUTTMAN: Well, let me tell you what the argument for putting -- this isn't personal. It's professional. Whatever. When I looked back at Eileen's article again, when it was reprinted, the cover quote that was picked out was, you know, in 1947, people were tried at Nuremberg. So, that Eileen or at least the Tribune, when they reprinted it, that was the focus. But the real question here, I think, that all of this comes down to, Senator Wellstone points it out, is we established an international standard of human rights. What is -- you know, this is beyond the particular experiment. It's beyond, you know, what -- you know, what is that about when that -- I mean that's a very elemental question that is the work of this committee. It's much more than, you know, Dr. X going into a hospital and doing something. It's what does it mean, and it gets into the levels of complexity about international law, the United States Government, and then the profession, and the relationship of the professions and practices and all those things, it seem to me, are in there, and to shy away from it is to shy away from the quantum contributions this committee can make above and beyond, you know, was there informed consent -- you know, and that's all. That's the gamble or whatever you want to call it for that opening statement. DR. LEDERER: I don't disagree with anything that you said. I just wonder about the strategy of setting up so directly in that way. That's all I'm -- I'm raising it as a question. DR. FADEN: I think Pat's about to -- MR. GUTTMAN: Yeah, Pat's got the answer. MS. KING: I feel much more strongly about it. I think that to start with Nuremberg is to feed into the mindset that Americans have about their place in the world that I would like to accept, and that is, you start off, as somebody said it, with the pure evil standard. That's the way you start, whether you start with Nuremberg, that is the way Nuremberg is commonly seen. Everything after that must of necessity work off of Nuremberg because we're not going to say we're pure evil. So, lots of people walk away from this report, maybe not us, but this is the way our history tends to operate, and say -- and they say, gee, we're not pure evil, and now I feel better, and I can keep on with business as usual. The message, I think, should be sent. This is -- I'm not saying don't discuss Nuremberg. I am agreeing with Susan that all of it is placement and how you discuss it. I have been much more impressed with people who talk about evil as being felt, and evil as being -- and in ways that don't let our own government off the hook as we continue to think of ourselves as the best country in the world. I believe that, but I don't believe we're perfect. I'm much more interested in talking about and emphasizing that our government was wrong. It may not be Nuremberg wrong, but it was wrong. It was wrong to have a set of standards, to start a set of experiments, to cover up those experiments. That's the message that I want to come through, because so much of our findings is built on that. That is where I'd like to start. We can then go back and pick up Nuremberg and talk about how the standards came out of Nuremberg, but I'll tell you, we lived with this for a long time. When I teach my students about Nuremberg, they're shocked because Nuremberg does not have the same salience for them that it has for me and perhaps a generation ahead of me. This is a country that's lived with the Cold War until very recently, in which almost anything could be justified in terms of maintaining U.S. position in the world, and the need to beat the other side during the Cold War, and that is to me what the emphasis of the report is. It is to say to us that we cannot justify everything in the name of our position in the world, our Cold War battles, etc. Now, I go back and pull up all of Nuremberg because I think it's important that people know Nuremberg, but people read a report from the first chapter, and the first heading says, "The Nuremberg Puzzle", and that's not what I want the first paragraph to say. I want the first paragraph to say there were things that we did that we should not have done, and that ties in with our findings, and my final point then is I actually wasn't going to speak so strongly, except that I see that it resonates in some of the other members of the committee, because I actually think the most important part of the chapter are the findings, and that's the part that needs the most work. MR. GUTTMAN: But that was inadvertently -- that was in some notes that was inadvertently attached. MS. KING: But I got that message, but the fact that they were attached was very significant to me because you've got us discussing remedies without discussing in detail findings, which is very upsetting to me, and I actually think if the findings have strength and link, which I hope they will be ultimately, it makes the point about where you start even more significant, I think. MR. GUTTMAN: Yeah. MS. KING: I'm through. MR. GUTTMAN: Can I -- this is a pretty elemental discussion, but the difficulty, I guess, -- the question, I guess, that I have, because I'm the one talking anyway, is, to me, the subtlety is the essence of this report because we've got so much evidence and we've got so much expertise, and I don't know that you can do justice to the subtlety frankly, I'll just put this out there, without starting with Nuremberg, for the reasoning that the basic questions that we're finding as we go through here are, well, you know, it was assumed by the ethics experts at the onset, well, there was a set of American medical practices that related to patients, but it wasn't the same as related to healthy subjects. Well, then what was Nuremberg about? We find the Secretary of Defense in 1953, you know, the Wilson memo. That is an American assertion at the highest level of the relevance of this Nuremberg principle. The question is what does it mean? In other words, this is not -- the difference -- what we're finding, looking backward, I guess this is the point, is not as might have been suspected, that people were freely saying, oh, national security, it justifies everything, we're finding the recognition this is the counter -- this is the subtlety -- this is the thing that's the extraordinary historical discovery of this committee. Contrary to what you might expect, people are running around, let's just do anything in the name of national security, ethics haven't been invented. People were saying, well, there's a Nuremberg Code, we got to have consent. In the middle of the Korean War, they issue it -- MS. KING: With all due respect, Dan, that's not the way it starts. It does not start by saying in 1953 or 19 -- whatever date you pick. MR. GUTTMAN: Right. MS. KING: An official promulgated this under a top- secret -- DR. FADEN: That's an interesting thing to say. MS. KING: It does not say that. MR. GUTTMAN: Okay. MS. KING: It starts with -- MR. GUTTMAN: Okay. MS. KING: -- a recount of what we found in Germany, and most Americans will start reading this report and then will say, so, what does that got to do with me. MR. GUTTMAN: Okay. MS. KING: And that is what I'm worried about. MR. GUTTMAN: Okay. DR. FADEN: Ruth, and then Jay. DR. MACKLIN: I was going to begin by taking the opposite side and defending this approach, but I think we're coming to a kind of compromise, which I can -- which I can -- MR. GUTTMAN: I hope you can write it. DR. MACKLIN: I think the rationale that Dan just gave, and I'm glad he gave it because it was essentially what I thought would be important to say, I don't think it's the Nuremberg puzzle. This is not a puzzle. This is the Nuremberg Code. There was no puzzle about what the Nazis did, the Nazi doctors. There was some puzzle about what went on in the United States. I think calling it a puzzle is to maybe even cast some doubt on -- but the purpose -- what is the purpose of starting with Nuremberg? It's precisely what Dan just defended; namely, to say something about what standards were known, thought of and discussed by the people who were the subjects of our report. So, I think there's a very good rationale for having that kind of stuff at the beginning. Now, that said, to try to accommodate some of these other comments, which I think are useful because it may be the way the chapter will be read when people just move into it, there are two different ways of talking about what Nazi doctors did in the context of human experimentation. One is to -- and at least one of these -- I mean the committee might decide which it wants to say, but one way is to say what Nazi doctors did to human beings is off the scale of anything anyone has ever done or should ever even think possible; that is, when you think of what unethical things have been done to human subjects in the name of science, in the name of Cold War, or whatever, this is off the scale, and therefore you can't even make any comparison. The second way of thinking about it is it's at one end of a continuum, and that's different from saying it's off the scale because to say it's at one end of a continuum is not necessarily to invite comparisons or to say, well, of course, we didn't do anything as bad as what the Nazis did, but it's to say that in the name of something, in the service of the state, in the name of, doctors have done some terrible things. So, we can decide which way to put it, but at least one of those has to be in there to set this against in a kind of comparison, so that -- or worry that Henry expressed and that Nancy expressed, isn't some inference that people make; that is, it might have to be set out here in one of these paragraphs. The other thing is I think it's timely, the -- it's almost 50 years from the time that the Nuremberg trial took place, and it's not a bad thing to include that. I mean I think it's a very good thing, in light of what Pat observes. The fact that her students, law students in 1996, what was this, well, World War what? I mean the fact that they all know, that they all know history, they're obviously too young to have a memory, says it's an important thing to put in here, and therefore, although I agree with your other point about, well, the Cold War winning at all costs, I mean it's a little educational something that the committee might do. But I think if we -- so, what I'm saying is I defend the idea of starting with Nuremberg. I think it needs this balancing or explanatory notes, and then the committee might want to grapple with whether what we want to say is what the Nazis did was off the scale but other bad things have been done or what the Nazis did was at one end of a continuum of which there have been some other pretty bad instances, and this report is a study of some of those. MS. KING: Can I follow up on the whole thing you said? I'm very worried about getting into the comparison game. So, I think that you have to be careful about that, and the reason I'm very worried about getting into the comparison game is whenever we play those games in this country, we always come out looking good. It's a human nature kind of thing to do this. I don't want to -- it's sort of human nature to do this. I do not want us to -- I am not -- I don't want to be understood as advocating we belong in the same camp as the Nazis. That's not my point. My point is we have something relevant to say about this country as Americans looking at our own country and making judgments about us, that is, I think, equally important, that is not particularly a comparative judgment. So, I don't mind as an American being proud of being an American, saying we didn't do some of the things that other people have done in the rest of the world, so I see a role for comparison, but we have -- we get into these spots all the time. I really want to emphasize, we can be better than we think -- than we are, but the way to do that is to look cold and hard at ourselves, understanding what we did right and what we did wrong. So, how to make both of those things come through, what kind of weight or emphasis to give to them. I do agree it's hard to write, but I think that is the story -- MR. GUTTMAN: Let me try another way. In other words, is what -- some of what -- sort of what I think Ruth and I are saying is that sort of the good news -- there are two good news pieces of the story that are pretty profound, and let me just that out. One is that contrary to what you might suspect, Secretary of Defense issued the Nuremberg Code or, you know, all those things we're finding, and it didn't, you know, nobody sued him or, you know, picketed him to do it. They just did it. God knows why, but they did it. Okay. That you didn't have to tell them in the middle of the Korean War. The second thing that's an extreme difference to me, I'm not sure how it works in the atomic bomb setting, is that by and large, while the medical profession may not have been extremely sensitive to the consent to that part of it, it was extremely sensitive to the risk part of it, total opposite to the -- I mean it couldn't be more inethical. They made mistakes, but that clearly they were setting there thinking about those levels, and that's not what the -- you know, and, so, the question is, is there a way to bring -- to me, take the -- whatever other basic points and bring them up front or something like that. MS. KING: And the bad news is, of course, we didn't implement it. MR. GUTTMAN: Right. That's right. Yeah. MS. KING: So, but it's a much more accurate picture of the good and the bad, which is what I think we ultimately want to emphasize, at least I do. DR. FADEN: What I'm hearing is that -- well, I don't want to attempt to synthesize it at this point, and my heart goes out to Dan because he's the drafter of this document. So that he has to take all of these wonderful insights and somehow turn this into language. So, I'm sitting here -- MR. GUTTMAN: I run the risk of losing Dr. Katz. Any change, and we run the risk of losing Dr. Katz. DR. FADEN: Well, I think it's interesting to point out that there are concerns being raised at both -- from -- opposite concerns about making comparison to the Nuremberg -- not the Nuremberg Code. That's really not the issue. But to the experiments. No, no, no. It's not the -- Henry said, gee, if you sort of lump them together, that you might leave the inference, and this was, I thought, Susan and Nancy's point, that somehow this draws -- differentiates evil, terrible, doctors do horrible things, and Pat's saying you also run the risk of the opposite inference, of drawing the conclusion, gee, against that awful -- those horrible -- beyond imagination experiments, this stuff sounds pretty tame, you know. Nobody was pushed under the water until they couldn't breath or exploded their lungs or any of this stuff. So, you run a risk either way, and it's dangerous territory to invoke the experiments themselves. The Nuremberg Code is a separate game, and, so, that's another level of nuance that needs to be distinguished. The Nuremberg Code obviously plays a central role in this story because of the elevation, for no other reason, the elevation and the attention that it was given by the military in relation to its own activities, i.e the Wilson memo, and that's sort of -- but I think that's an important distinction that's emerging. The Code's important, but we can talk about the Code without -- MR. GUTTMAN: That's right. It's the principles of the Code that are the question. Those are -- those really to me -- every kind of thing we're talking about here could be somehow connected to that. DR. FADEN: Ruth, is this back on -- Jay and Mary Ann are waiting. So, I'm adding you back on. All right. Jay, Mary Ann and Ruth. DR. KATZ: I know we would get into this discussion. Look, the first attempt, I just published an article I can make available to you. It's the first article, and it's -- I found we had to write it. I'm sure I'll write more on it. Trying to compare the Nazi experiments with contemporary research. The problem is, to my mind, that the Nazi experiments are both completely off the scale, unprecedented in the annals of human experimentation, whatever was done, in the way in which these subjects were treated. They could have been hang-quartered for how they used the subjects for research. On the other hand, there's also continuing, continuum, between the Nazi experiments and contemporary research because you have to look at the defenses that the Nazi physicians gave to the conduct of the experiments, and not talking now about the way they used the human beings. These are the same kind of the defenses that are proffered now and have been proffered over the decades. The problem -- but I'll leave that aside for one more comment. The problem is, though I've discussed this particularly with Dan a lot over the months, is the prominence we give to the Nuremberg Code beginning and throughout. The Nuremberg Code speaks to very lofty principles, and the Nuremberg Code creates -- if -- if -- given weight to, would create all kinds of problems for research. A lot of the research couldn't be conducted. The first principle as put forth also in this chapter, and I talked to Dan about it, is only saying that the voluntary consent of the subject of research is absolutely essential. There are -- there are not a few sentences tacked on to that first principle, and if you take those seriously, it would create all kinds of -- in itself, all kinds of problems for the conduct of human research, and it should be quoted. But look, the Nuremberg Code was really never enacted anywhere in the world. As I said, and I think it's true, the AMA version is a puny substitute for the Nuremberg Code, and the Helsinki Declaration, which really became for years the official code for American and world medicine, is a paler version of the Nuremberg Code, and if you measure the Nuremberg -- if you measure, as I would talk about a bit tomorrow, current research practices against the Nuremberg Code, there's lots of trouble that we then have to face up to, and in terms of contemporary practices. So, the problem is, and I'm perfectly willing to live with it, the centrality we give to the Nuremberg Code, and one final comment. As Susan said, the good news is that Wilson promulgated the Nuremberg Code. My response would be the bad news is that not that Wilson promulgated the Nuremberg Code because what he promulgated was thoughtless and undigested, and he signed off on something that he, of course, maybe he should have known better, put that in quotes, responsibly couldn't have known because he didn't know anything about any of this, and neither did most of his -- many of the people below him, but somebody should have known, and there have been some beginning writings on that, that the Nuremberg Code in the way in which it was written in its totality could never become a code for the conduct of research. Oh, it would be wonderful if it were, but then what would happen to research is another question. DR. FADEN: Pat, did you want to -- MS. KING: No. Add to the list. DR. FADEN: All right. Add to the list. Well, can you give us the article you just referenced? We didn't see it. We would like to see it. We would like to see it. DR. KATZ: One more second, please. I like what Pat said in a way, but I'm not sure whether we can do it. We also have to be realistic and stick with what we have in the remaining time, and I think Pat has referred to it before. On the one hand, there is the rough language of the Nuremberg Code, which I like; on the other hand, what's been going on is what Hannah Arendt memorialized and which is reflected in the Cold War experiments, also the knowledge of evil, and I think that is what Pat was referring to. DR. FADEN: Mary Ann, Ruth and Pat. So, if you want on the list, let me know, Eli. DR. STEVENSON: I have similar concerns to Pat and Susan, and certainly I think the Nuremberg Code must and has to be included with a great deal of discussion in this report. But I am concerned about beginning with it, and one -- it's always hard to know where to start the story, but sort of reflecting back on things that actually even President Clinton said to us that -- almost year ago meeting we had at the White House, in terms of what are hopefully we would accomplish in the report, and one of the things he said is, to paraphrase, to restore the faith of the American people in the American government. And to a large extent, I think what happened during this period was, in the '40s and '50s, at least to external viewing, you know, America was sort of at the top of its game militarily, economically, and the American people, I think, to a large degree, felt like their government was good, was almost entirely good. It was maybe untouchable. And I think what we found over this period of time, particularly when we listen to the public comment, probably the most striking to me from the atomic vets, is that incredible feeling of anger and bitterness at the betrayal of trust and shattering of an ideal, and, so, I think one thing that should be or could be included and maybe a way to start is to sort of chronicle this evolution or sort of almost fall from grace of the perception of the government by the American people, due to some very bad behavior, and, you know, almost this hubris that since we were so much on top of our game, you could do anything you wanted. MR. GUTTMAN: Here's -- let me see if I can crystallize. I'm not sure this gets it. There's a couple ways of doing these things, and one -- I'm hoping that this is sort of somewhere in Pat's territory when I'm talking about this. One is to sort of give examples and tell stories, but there's nothing you can say up front that is going to do justice because it's going to be something, you know, what -- it will sound banal or people may disagree with the facts or, you know, that's what the whole report is. As President Clinton said, tell the story. The other is to try to capture some kind of concepts, conceptual ideas that from which questions will flow, and then all the nuances that -- where everybody is agreeing are essential, you know. Misplaced trust and all these kinds of things will flow from having to reflect on what those ideas mean as opposed to, you know, telling examples that, you know, 1945, someone was in an auto accident and so forth and so on. The question is, I guess, whether you structure the introduction around ideas from which, if you begin to -- which Reed said, once you -- people don't spend your time thinking about those ideas, but once one is asked, then certain answers or certain things become apparent, and to try to get that sense up front rather than the recitation of particular stories or facts because that's what the whole report is. You can't jam everything that everybody wants to jam, you know. That seems to be the -- DR. STEVENSON: You can still set sort of the general stage of what the mindset was in the '40s and '50s in general, you know, what the general feeling of people toward the government was, how the U.S. was perceived worldwide as sort of this super man/super human country at that point. Yet, underneath, they have either no or certainly not enough moral fabric, maybe out of inexperience, maybe out of youth, whatever, but they were clearly deficit in many areas that the government, we, whatever, were deficit in areas that we weren't really acknowledging, and sort of from that, this -- these experiments came or the attitude that you could do these experiments came. I know I'm not being very helpful. You're asking for - - MR. GUTTMAN: No, no. But, see, to do that, is to then tell more of the story. DR. FADEN: Not necessarily. I don't think so. I mean I heard -- this is easy for me because Dan's going to do the work. So, it's -- he's going to do it. Somebody's going to do it. MR. GUTTMAN: Yeah, right. DR. FADEN: But it's -- but, I mean, what we're stuck on here is how you start, right? Sort of what do you lead with, and I echo Jay's comment that -- and Ruth was saying the same thing, that it's readable now. It sucks you in. So, if we're going to find some other way to start, we got to find something that's as successful in drawing the reader in and capturing the attention. MS. KING: You didn't ask the rest of us whether we were sucked in or not. DR. FADEN: Oh, I'm sorry. I agree with Ruth and Jay. I was sucked in. Okay. So, not everybody was. So, the issue is obviously not everything appeals to everyone, but we need a way to get started that seems to start with a message that we're comfortable with but also is successful at intriguing the reader and enticing that person to go on further. DR. STEVENSON: I think the plutonium -- sorry to hop in on this, but I think the actual plutonium story will suck most people in. I mean it's very well known at this point, but I mean I think we've got stories of our own that are as engaging -- MR. GUTTMAN: Well, let me ask you something. If I told the plutonium -- if we told the -- could you tell it in less than 30 pages? If we tell it at 60 pages length later on because to tell it in any truncated way is -- you know, leave out precisely the nuances that are the ones that we're all concerned about. DR. FADEN: I don't know. Why don't we just get the discussion going? Did you have another comment, Mary Ann? Okay. So, I've got Ruth now, Pat and Eli. DR. MACKLIN: I wanted to move forward a little bit into a little substance in these first couple of pages, but I'm afraid it's going to take us backwards. This may be a way to -- I hope, I thought it would be constructive to solve this problem by not saying too much that might turn out to be misleading about Nuremberg Code at the beginning. Jay was worried about this from the outset. I am not now convinced, and I'm sorry to say this, I signed on too quickly at a previous meeting to something, I am not now convinced that of the claim that's made at the very top of Page 2. So, this is early on. Namely, the close reading makes clear that three American justices were convinced by these arguments that the Code is framed as a description of what had been the accepted practice, including the United States and Germany. Now, here's the distinction I think that needs to be made here. While it's probably true as the bottom of the sentence -- bottom of Page 1 begins, "The American prosecution team argued that the ideas inherent in the Nuremberg Code were not novel or controversial." The ideas inherent in it. It is simply, I think, not true that the Code is a description of what accepted practice was, and when you look at the statement in the -- on which all agree, where the emphasis is added, it says all agree that certain basic principles must be observed in order to satisfy moral and ethical. What the agreement is is that all -- they agree on a certain ideal. But it doesn't say all agree that certain basic principles are in fact always observed. Now, I mean that may seem like a nit-picking difference, but it's an important difference. People are agreeing on an ethical ideal or on an idea of what ought to be the case. That's very different from what might turn out to be misleading; namely, that in fact these things were practiced. Now, let's look at the two elements in the Nuremberg Code to see what seems likely to be true. I think what people will agree, and what the core of this, is that when it says the Code is a description of what had been accepted practice in the civilized world -- oh, no, it's in the Code here. The well- defined bounds conform to the ethics of the medical profession generally, and that is that medical professionals didn't go around putting people in cold water until they froze and putting them into pressurized chambers, etc., and all the discussion about the risks that you later go on and that the chapter and/or story later goes on to unfold reflects the way doctors talked about what kinds of risks one may put people to. What was not accepted practice as we know, accepted practice was getting the informed consent either of patients or as subjects. I mean those words appeared in various places, but that was not accepted practice. Now, I don't think you can say all that in here. I mean maybe nobody agrees with my analysis now, which is that it seems to jump in too quickly to an empirical claim of what people agreed was or at the time accepted practice. I think what they're agreeing is that this is the way people ought to behave. DR. KATZ: Ruth this is the very question, but this is an important quote, what the judges believe. It's not a statement -- DR. MACKLIN: I know, but I'm -- DR. KATZ: I don't understand what -- DR. MACKLIN: -- trying to interpret the statement of what the judges agreed, of what the judges said. When they said all agree that certain basic principles must be observed in order to satisfy moral and ethical and legal concepts, they're saying no one would say, ah, you can put people in cold water, you can do anything without their consent. All agree that these are the principles or the legal -- legal and ethical concepts that must be adhered to. What they were not saying is that all agreed that certain basic principles are and have been accepted and practiced. DR. KATZ: I think that my reading of it is that's what they meant. That's what troubles us with the Code. DR. FADEN: Yeah, I think that's one of the problems. There's another level of nuance. When you read the stuff, it looks like the judges believed that this was -- the practice reflected these principles. Remember, the judges are not bio-medical scientists. So, as an aside here, one of the things we're engaged in is a combing of the transcript of the Nuremberg tribunal right now to see what evidence was adduced based on which the judges reached the conclusion that practice conformed with these principles. DR. MACKLIN: But that practice is going to focus on the risks and what doctors may do to their patients. It's certainly not going to be focusing on -- DR. FADEN: No. One operating hypothesis is they believed it because Ivy told them. I mean we don't really, you know, now. Okay. It could have been simply Ivy said, look, this is what doctors do, and they said he's the representative of the AMA, we're a bunch of lawyers, fine, that's what he says, the AMA says this is how doctors do business. So, I think that here I would agree with Jay that the reading -- it does appear that the judges believed that this was reflecting practice, but that's different from whether in fact it really did. MR. GUTTMAN: Ruth, what you're pointing out is precisely the ambiguity and the complexity, which is another -- what did they mean? I mean your layman might read it and think it's such and such, and here is a central piece of historical, you know, what does it mean. I mean, so, you can treat it that way just as readily, I think, and it will have the same effect, and I don't know if it makes it more or less interesting for Pat's students, but -- DR. MACKLIN: Well, all I wanted to say about this is that because it requires a little more description, in order for the reader to know what it's saying here, this discussion might be moved elsewhere, out of the first two pages, in order to accommodate some of these others. DR. FADEN: Because it's so complicated. DR. MACKLIN: Right. Becuase it's complicated and nuanced. So, I'm still supporting the idea of beginning with basically the way it does, but not plunging too quickly into the nuances and the controversies, but switching gears, saying, -- having a transition paragraph, and then switching gears to the Albuquerque Tribune paragraph. I mean there might be a way to do it so that it doesn't go on and on with Nuremberg, which I think is even partly the misleading part. I mean maybe some of the dissenters here would be a little happier if it were shorter and then made the transition paragraph that said something like, well, what the Nazis did is off the scale, etc., and then come to the Albuquerque Tribune part. I don't know. I'm only suggesting that if we have to discuss what I think is a bit controversial, certainly one page into this report is not the place to do it. MR. GUTTMAN: No, I didn't mean to -- you're right. We didn't -- it was not an assertion. It's questionable. Then we can say it's an ambiguity rather than a reality. MS. KING: I think this discussion is important, and I think it's important because it's not merely a discussion about the opening paragraph. I think that the reason the discussion is important is because we are debating what we think this report is doing, and that's what we really -- I think if we could get some agreement on that, we could probably get agreement on the opening pretty easily. I think that the opening paragraph should really tell in a short summary, and that's what the purpose of the introduction is to do to some extent, too, what it is that the reader can expect to unfold as our story, and my first criticism, of course, is that this does not do that. I mean when you read introductions, you -- that is what you expect to see. In some sense, you want to know what stories we're going to tell. I think what I think our story is, and I think that other people can, too, and we won't necessarily be in agreement, but that might be more helpful, I think that the discussion, I think that what we're talking about is, to try to capture what I've heard, I don't think we're talking about the Nuremberg Code. That's the first thing I want to say. I think we're talking about the level of expectance that we haven't caught yet. I listened to Jay talk about the Code versus principles. The first thing that hit me was, yeah, that's the way I think about the Constitution. There's some language in the Constitution that's awful and picayune, and we all ignore it, but the reason that the Constitution is a wonderful document in our society is for those few ringing principles that we think summarize what this country stands for, and if we get down to the right to bear arms, and then we start talking about who's left out, we get a little nervous, but what we are all proud of are some winning principles that come from the Constitution that we all buy into. Well, for some people, not the people necessarily sitting around this table, who are people who are not ethicists and who don't spend their lives working on these issues, scientists or philosophers, the Nuremberg Code has some principles that we think are important, the most important of which is captured here, which is the principle about voluntary consent. So, I disagree with Jay that we want to have all of the language that goes along with that. The central part of -- and we shouldn't call it a code, we should call it Nuremberg principles or that what everybody -- that we believe most people buy into, and that if there's another principle, state what that is. I think what we are saying is there were some principles out there, we can debate whether we have a 30 as well as a 40, but they're clearly there by the time we get to the Nuremberg trial, and they're clearly there by the time Wilson issues this memo, that there's some principles out there that we think are important and where generalists ascribe to -- I'm not talking practice, principle. The story is that in this country, the principles were practiced or interpreted or implemented or not implemented in ways that most Americans frankly, I think, would find shocking. Then and now. I'm not trying to talk about what was being practiced. I think the beauty of the testimony that we keep hearing is that is what keeps coming through. Just as Mary Ann's point. It is a breach of trust, and the trust comes from some idea of what you thought the country would buy that it didn't buy. What we thought we were buying were some of these principles captured by Nuremberg, and the breach of trust is what we keep hearing. I think the -- that is the story we have to tell, why we broke faith, but the other part of the story is that it is a country that is re-examining itself. It is saying let us go back and take a look at our principles. That's why we got set up. Let us take a look at our principles. Let's take a look at what we can find about this breach of trust, and what went wrong, and it is our job to say what we thin ought to be, and that's what I think should be captured in the opening statements, that none of the discussions of the Nuremberg puzzle, no discussion of Nuremberg Code, but a discussion of this -- this starting set of assumptions that most of us can -- MR. GUTTMAN: Pat, can I ask a question? I think what -- where we tried to do that is the part at the end of the introduction. MS. KING: That is on Page 1. MR. GUTTMAN: Okay. But is the end an acceptable -- you know, with all the stylistic rewriting and all that kind of stuff, does that convey the concepts that you're trying to get across? The last -- not the -- before the notes. Beginning on Page -- the story -- DR. FADEN: 10-11-12? MR. GUTTMAN: Yeah, 10-11-12, yeah. Yeah, the story. The thing about beginning -- the part called the story at Page 10. DR. FADEN: In other words, starting with that rather than editing. MR. GUTTMAN: Yeah. DR. FADEN: Are we looking for the same thing? MR. GUTTMAN: It's the last segment. It's the last segment of the narrative. It starts, called "The Story". It's called "The Story Part". MS. KING: At the bottom of 14, top of Page 15. DR. FADEN: Sorry. I've given you the -- Nancy's right. MS. KING: Page 15, 15. MR. GUTTMAN: Yeah. It's not -- MS. KING: That is getting back to where I -- where -- yeah. MR. GUTTMAN: Yes. Okay. But is that the kind of thing that's okay for a start? MS. KING: I mean I read it, it's fine as a summation, but I think that the part that, if I recall from yesterday, that did not come through -- this is a good frame. The part that doesn't come through is the sense of distrust, and how it -- how it -- how we see ourselves. MR. GUTTMAN: That's fine. I thought that was -- I thought that was clearly in there. I thought it was clearly in there. DR. MACKLIN: This was the beginning of the -- what we saw previous -- MR. GUTTMAN: Right, right. DR. MACKLIN: It began right with this -- MR. GUTTMAN: Right. In other words, -- right. So, I just -- when I wrote it, it seemed to me that to start with that, people were saying what the heck are you talking about, trust, distrust, this and that. MS. KING: This is the story you want to describe in the beginning. This whole report is going to be about -- this whole report, the story on -- isn't it? MR. GUTTMAN: Well, yeah, but it's just how you get the reader into it, and this is stylistic. MS. KING: Well, you always get me into something when you tell me what's coming and why I'm going to find it intriguing. That's why I say I can't be one of those that got sucked in. I always get sucked in when I know where I'm going. DR. MACKLIN: This is very clear. This doesn't require -- this doesn't have any puzzles about trust. I mean the way this reads. This could be an equally-acceptable beginning. MR. GUTTMAN: Well, if that's okay. DR. FADEN: Well, I believe the message -- one of the messages that's coming out here is that we want to lead with what this is really a story about, and this is not a story about the Nuremberg trials, and if you start with that, that's the information that you're giving quite apart from the second order of questions of the problems of comparisons and how it can go down in problematic ways, either way the comparison inference jumps, but, rather, we should lead with what is our story, and ours is an American story and not a story about the Nuremberg Code or the Nuremberg tribunals and so on. So, it's turning it around and saying what was wrong here, what was right here, what -- why did we get started, and we didn't get started because somebody uncovered a document about Nuremberg. MR. GUTTMAN: So, the general question, I guess I'm asking, are the pieces already here, but you're reworking the pieces rather than -- that's the question I'm asking. Yeah, yeah. DR. MACKLIN: I think it could start with this and still -- MR. GUTTMAN: When you say this, just -- DR. MACKLIN: I'm sorry, I'm sorry, I'm sorry. Starting with the paragraph entitled, "The Story". MR. GUTTMAN: Yeah. DR. MACKLIN: That could be the very beginning, and then it could move with an appropriate transition to the Nuremberg stuff in order to bring out what those principles were. MR. GUTTMAN: Right. DR. MACKLIN: Of course, this talks about this story and the Cold War, etc., and then you can move backwards to say, well, because it does make some important points about the standards. Well, I think with just a little shifting around in the transition, we're -- DR. FADEN: Okay. Jay, can you wait? DR. KATZ: Sure. DR. FADEN: Eli, Henry, Jay. Eli? DR. GLATSTEIN: Yeah. I think that it's a mistake to start with the Nuremberg, as we've heard already. I think you want to put that in the frame of historical backdrop, and I think the history -- timing, I think, is very critical here, after the country having come through 15 years of depression and war, and then a sudden euphoria, and then realization that problems were still in existence with the Cold War, all in the framework of the rugged individualism, all that sort of business. MR. GUTTMAN: You are the only person here from Texas. DR. GLATSTEIN: I'm just trying to talk about this -- I want to get back to the theme that came out, which I think is the critical theme, breach of faith. MR. GUTTMAN: Yeah, right. DR. GLATSTEIN: Breach of faith, and you have all these themes running through it and being emphasized by some people more or less, secrecy coming about because of the Cold War. I think all that's -- I think to begin with, what you're calling the story is the place to begin, and put -- and basically reshuffling. It's not -- what you've done is terrific. I just think that you're starting with the wrong Page 1. DR. FADEN: We are reaching something here. This is good. Henry? DR. ROYAL: I want to make some comment really about the process by which the report gets written. I think that the report will be better the more input it gets from a variety of people. I don't know how many people actually have seen these chapters and have worked on them to get them to where they are. The process -- that's the only way it could be done, I mean. A small group of people had to start somewhere. What I'm trying to say explicitly is that this may be a good starting point, but I would like to think that we're all open to some major changes, depending on the feedback that you get from committee members. I recognize very much that we have a very short time line, and, so, I'm encouraging myself and other committee members to make comments on the chapter quickly. I mean we were talking about some deadline, next Tuesday? DR. FADEN: Whatever it is. There's a deadline on the sheet that you got yesterday. DR. ROYAL: So, what might -- what my proposal is, is that this is a starting point, that the committee is going to make substantive comments, and those substantive comments are going to be circulated to committee members so that we can get some sense for ideas that other committee members have and to try to do this in a more formal structured way. Even, you know, discussing it around the table like this, it's just -- it's hard to react to because someone will say something, you might not completely understand what it is that they're saying or the implications, or you might need more time to think about it. It just seems like a haphazard way to do some important business. I'm trying to encourage a consideration of an additional process. DR. FADEN: We have this process that we suggested and agreed to do yesterday. So, that's the process. But I think -- I guess I have a slight disagreement, Henry, in that I think the work that gets done collectively in these committee meetings is critical, that this responding back to -- I guess maybe it's a stylistic issue as to what you trigger more often of somebody's written comments or the exchange that occurs here. So, let's just say that they're both important, and there may be style differences to what causes you to react more to each of us as individuals, but I think there's no substitute for this kind of a work, this collective talking about points. MS. KING: I would agree with what the Chair just said, but I would also say that depending on what stage you are after - - DR. FADEN: Well, when it comes late. MS. KING: And one of things is not the language here so much as -- this precise language, but the scope of the chapter and what the chapter is to do. DR. FADEN: Right. MS. KING: And that I think needs to be discussed. I think that when you get down to the language differences, and they will come, that then it's very important to do what you said, because you can see it all down on paper, but there's some agreement about what the goals and objectives of the chapter are. DR. FADEN: I would agree. The reality is we've got to do both simultaneously. That's the awkwardness. So, we've got to be doing all -- you know, the whole thing all at once. DR. ROYAL: Well, I guess, let me back up a step. I guess I'm not sure what we're doing. Whether or not what we're doing is deciding that this is a good starting point with the provision that we may end up some place with this chapter that we didn't expect to be, that that's still a possibility, that there may be some quite substantive changes to the chapter or whether or not what we're deciding here is that this is not the starting point, and this is not -- that one of the options really isn't that this chapter could be very different than what it currently is, but that we're really sort of endorsing the chapter pretty much as it is. So, I need to be told more what it is that we're doing right at the moment. DR. FADEN: Beginning with the Nuremberg puzzle. DR. ROYAL: The chapter. I want to know whether or not we're endorsing the major structure and components of the chapter or if we're agreeing that this is a good starting point, but that it's conceivable that there could be some quite significant changes to the chapter in the next week or two, depending on committee comments. DR. FADEN: Jay, did you want to respond to that or are you -- DR. KATZ: Yeah, yeah. Is there some merit to a suggestion, and I think probably you all have done so when you've written a book, is to really finally write the first chapter last, the opening chapter of the book? I think we have to return to this chapter and the suggestions that we can make because only after that whole document can we put the opening chapter into its place. Let me tell you more specifically what plagues me, and you will hear more about this from me tomorrow morning, about my evaluation of contemporary research practices. I find lots of problems which you may not find, but I have convinced myself there are lots of problems about informed consent being the cornerstone of the ethical conduct of research, and in reading this chapter, I wondered in what we are saying here about all kinds of things, if the ultimate conclusion of the committee is that there's lots wrong with the way human research is being conducted today. How does that have to be reflected, also, to some extent and in some ways in the opening chapter, and it's for these and other reasons as well that I wonder whether we can get down some general instructions and really know that we have to come back later? MR. GUTTMAN: Well, let me tell you what I'm hearing. I'm hearing a couple of things. One is obviously people feel Nuremberg Code for a whole variety of reasons shouldn't be put up front. That's clear. Two is people think that it should be told from the Cold War-American story and obviously all the nuances, to the extent it can be brought up, that you're talking about. The question then is -- and there is some suggestions about different hooks, you know. Mary Ann said, you know, start with the plutonium injection. We said that's a separate level of question. That may be what gets the reader into it-type questions as opposed to, you know, what do you have. I think the big question, what I'm thinking through hearing, is that the components of what you all want are sort of by and large there. Obviously the particular wording isn't, and certainly -- but the components are. The particular hook. When you start rejiggling it, you've may find out that they don't get fit. The real question you're going to have is how much can you load into an introductory chapter because having sort of struggled with so much of this, the story that we're telling is so rich and complex and nuanced, that by trying to put too much of what we're finding into the first chapter, it's like the whole thing topples because then you got -- well, you're really not finding that, it's a little more complicated or, you know, -- and, so, the whole thing topples, and the reader is saying what am I reading the rest of it for, and that's, I think, the -- that's the balance, is once you start, you know, sort of this like congressional pork barrel log-rolling, once -- once everybody's kind of special interest in a particular finding gets in there, right, then everybody else is, well, you know, this and this and this, and the other way to do it is saying, look, we've got a lot of stuff in this report. It's all going to come out and do time. We'll try to guide you there, and to make clear we're not making an -- you have to make whatever clarity you need to make about the overall good and bad that we're finding. DR. FADEN: Let me say something. Duncan is waiting patiently, and now Mary Ann wants to get back in the list. Just so we know what we're doing, we'll take a break after this chapter but before we do the next chapter. So, we need to take a break. But, Jay, I think I kind of write that way, too. So, I understand what you're saying, but I think we obviously then reserve the right to go back when we've got the rest of it in shape and say this is off in this respect or that respect, now that we've got everything together. Henry -- and, so, I think you're right, in whatever conclusions we do reach, and we have far from reached them because we're now just beginning to look at the beginnings of our data base for making any kinds of conclusions about the contemporary situation has to be signaled in the introduction, but we're not thinking that way yet. So, it may well profoundly affect how this is constructed or it may not, but it's got to be there somehow, so that the reader knows that the story is not only about the past, that we're going to tell. Henry, in your plan, I think my own personal reaction is that if people have strong negative feelings or reactions to content that's in here now, we need to hear it now or think that, you know, there's big holes or chunks missing. People may have that view later. I mean they go read it more carefully and conclude, hey, it didn't hit me, now it hits me, that this is wrong or this is misplaced, but if people have very strong feelings or reactions that either content here should not be or content is missing and should be, it would be good to hear it now, so that we can get the reactions of our colleagues quickly, efficiently, and that's what I'm saying, certainly reserving the right that when you send in your detailed comments, you do the process we agreed to, and, you know, tomorrow, I may see something I didn't see today, but at the same time, I would hope that nobody's holding back now. Okay. And if somebody really hates something here, they should come out and say it, so we could all hear that kind of thing, and that would better position the staff to be thinking about how to restructure this. So, writing is going to go on all the time. DR. GLATSTEIN: I think you've heard -- DR. FADEN: Right. That's what I said. So, the question is, is there anything else that is really glaring out of here? Henry? DR. ROYAL: One of the decisions that this committee is going to have to make at some point is to decide how much of the limited resources it's going to want to devote to preventing wrongs from happening in the future versus how much it's going to want to -- how much of its resources it's going to want to do to right wrongs that have happened in the past. In this opening chapter, there seems to be a tremendous emphasis on the past and not much emphasis on the future in contemporary work, and I know that I personally would -- I think given the same resources that one can -- it's easier to prevent something from happening in the future than it is to undo a wrong that has been done in the past. So, it's the -- what's the expression? An ounce of prevention is worth a pound of something or other. MR. GUTTMAN: Right. But that's an easy one. I think the reason that's -- this chapter -- the reason it's very simple, we don't know what it is we think we can do about the future at this point. We don't know as a committee. Once you know that, then you can point that out. I mean that's not -- DR. FADEN: Well, that goes back to the question in today's point that we can't finish this chapter by any means until we get all the way through. MR. GUTTMAN: Right. DR. ROYAL: Well, again, and it goes back to my question about whether or not this is the starting point or whether or not we're supposed to think that there are no -- going to be no major changes to this chapter, that if we have -- I mean you just said yourself what you want to know is whether or not we have any major concerns about this chapter, and if we do have major concerns about this chapter, you want to know about them now. DR. FADEN: If you get to them later, we'll hear them later, but the point being reserving all of us the right that tomorrow I may read this and something may hit me that didn't hit me today. I was just encouraging people to share any criticisms they have, that they already have, so that staff can be thinking about addressing those, even if new ones emerge. MR. GUTTMAN: Can I just -- Henry, what you're talking about something -- one thing that's not there now is a paragraph, page, whatever, saying and one of the parts of our story is that in fact there are problems or there are things that still linger today, and an essential part of the story is how we can do things better in the future, and then going into whatever level or detail. I mean is that -- is that the block that you're talking about? Something like that? Or what, you know, -- DR. ROYAL: That is part of the block. I think the other part of the block is providing people with templates or framework by which they can do their own ethical evaluation of experiments, and I don't see any of that there. I also don't see anything about the complexity of the task. It comes across to me as being very black and white issues. MR. GUTTMAN: Then that is a mis-reading of what was there. DR. FADEN: Okay. Those are all important to note. And, again, we're going to get people's written comments. We'll proceed with the proviso that once we get clearer on where the committee stands on the contemporary world, however this chapter needs to change to adjust to the conclusion the committee draws, the chapter will be adjusted. But I don't -- I didn't mean to sound glib or anything. I'm just saying don't hold back, guys. I mean if you have reactions now, let's hear them now because this isn't going to be going on all year. MR. GUTTMAN: But what I hear Henry saying, though, is that there's a part of it that has to be added, but we don't know what it is because you haven't gotten to the -- that part. DR. FADEN: Right. MR. GUTTMAN: The other part -- I mean of all people, I'm perfectly capable of making things more complex, and I'd love to, and if that's -- I will work with you closely on making it more complex. DR. FADEN: Yeah, but I think we got to agree that this is, too, after all, an introductory chapter. We're trying to bring the reader in. We can't do everything there. MR. GUTTMAN: Right. Put us in a room together here. DR. FADEN: I would hate to see the beginning complicated. It's going to get complicated soon enough. Personally, I think that's a mistake. Boy, there's a lot. Duncan, you've been waiting. DR. THOMAS: I don't have a clue how to begin this chapter, but I guess I'm finding myself dissenting from what appeared to be an emerging consensus that we should begin with the bit that's entitled "The Story". I've attempted to reread this bit while still paying attention to the discussion, something I'm very good at doing, but for me, it doesn't -- it doesn't grab me. It doesn't provide any hook. All generalities. It works extremely well as a summation of this chapter. It's full of lofty principles. It provides me the road map to what are the issues that will be discussed throughout the rest of the chapter, and it works very well in its present place, and I don't see it very well as an introduction. DR. ROYAL: Could I just comment about that? One of the things that's bothering me is the fact that we talk so comfortably about hooks into the chapter, like we're selling a book or -- I -- it just -- we're not talking about the substance. We're talking about some sexy way to present the material, and I don't think that that's what we should be doing here. MS. KING: I would disagree with the last -- with the last point that Henry made because the statement that I made is that the reason that the opening is taking so much time is because I think it reflects disagreements about what the report is to do, how we see the report, which I consider a substantive issue, not a sexy issue, and I think that we should have a discussion about what we think this report should be doing, what we see as good, because that's important to us, and I think that it ought to be in the beginning. So, I don't think it's a question of sexiness. I think it's a question of putting it up at the very beginning of the report. What captures a reader in my view is when you state well what you are doing, and what is to come, and I know, I see it as a critically substantive issue, not a question about hooks. Others may see it differently, but I see it as sort of critical because that's what a reader decides. Is this the kind of report that is going to say something that I am interested in, because I know this is what's coming up front, or do I think that this can be junked, thrown away, and I just think that that's critical, and we may revise it, by the way. I agree with Jay that we revisit the beginning after we've been through, but it's important to have some initial idea of what's in your mind as you start to go through, and then if you need to revise, you revise against that, and you come back to the beginning. DR. FADEN: Reed? DR. TUCKSON: I've been trying real hard to listen, to be able to have harmony. DR. FADEN: Thank you. DR. TUCKSON: And I'm failing miserably. I really -- I really see the introduction as well as -- I mean we were -- we were convened for a specific purpose, and the introduction to me is -- I'm really confused by it. I mean we were convened to do this thing. DR. FADEN: Tell us what the thing is, see if we agree. DR. TUCKSON: Well, I mean this thing -- DR. FADEN: That would be a -- DR. TUCKSON: -- is the charter. I mean it was this charter. I mean it was that there were issues that happened that are of concern to this country, and I think the writing and the compelling issue is in our exploration of these -- of this, says that yes, there are very important issues that ought to matter to every American, and here is why. This is important to you for the following five reasons, bang-bang-bang, it affects your life, it affected real people who lived before you, it set a precedent and a tone for how we behave in certain critical areas, and it sets the template for the future of this country. Boom. Therefore, you know, now we've got that, now here is the process by how we did our work, and here are the implications, and I think what happens from that is, and I think that one of the other -- the only other issue that I heard that's being discussed and is very important is, it is that this work -- to determine proof, to determine absolutes, is very difficult. So, reader, be warned on the front end, this stuff is hard. You have to pay attention. There aren't a lot of real clear-cut rules on this deal. Here are the best rules that there are. Nuremberg, bang. Now, that's the -- now, -- but it leaves unclear these issues, which we have to struggle with. One, whether or not it got -- whether or not Nuremberg got in codified by law or whether it should have been codified by agencies of the government, such and such and so and so. We grappled with those dilemmas in a painful way the best we could come up with, after hard doggone work and much consultation, are the following kinds of conclusions based on these reasonings. We are a group of Americans. We did the damn best we could in an impossible situation. Here's how we got to the outcome. Here's what the outcome was. Thank you all very much. MS. KING: Reed's argument is an argument for starting the chapter factually and historically with the Welsome article in the Tribune. It -- people were shaking their heads about that, but what follows a lot from what he said was what were the immediate benefits that led to our creation in the sense -- this is in the report, too. MR. GUTTMAN: We have that. It's already in there. MS. KING: We have that. But it's an argument for starting with that point and saying these are the kinds of questions that were raised. This is what the charge was. This is how we proceeded, and to get at some stuff that Reed said, which is -- DR. FADEN: Why should you care. MS. KING: -- why should you care, and what is here that you should be paying attention to, and to draw home the point that we struggled with these questions. They are hard, and the struggle will continue. That's basically what he's saying. But we are giving you -- in looking at that history, which we can date at a certain point, we should date at a certain point, arbitrarily, that this is our best conclusion, based on where we are at this time about what we should do. That's the thrust of what he's saying. DR. FADEN: Ruth? DR. MACKLIN: This most recent discussion goes back to what my opening global comment, namely about whether we're going to focus -- whether this chapter is dealing with the events and the substance or with what the committee did. Now, I have another proposal that's a little different, but it's responsive to what Duncan said, and what I think I found attractive about the Nuremberg opening, and that is, and it also builds on what Mary Ann suggested about the plutonium, that is, begin the chapter and focus not so much on the history of what led to the creation of this committee, which is on the current Page 3 about the -- well, beginning on Page 2. There were the Welsome articles, then there were these other reporters for the Massachusetts, the press reported this in Tennessee, the press reported that in Vanderbilt. What's -- that's -- talks -- that builds up to what happened for the creation of the committee, but it might be much more compelling to start with not that this press report that, but indeed just what happened. Plutonium injections were done here, total body irradiation was done there, soldiers were done here -- MR. GUTTMAN: Well, -- DR. MACKLIN: I'm now trying to make a point about what could be the beginning, and then go back and say these things about the committee. MR. GUTTMAN: We thought about it. I thought -- this is not -- the problem with that -- the question is -- I don't know if this discussion has literary methods here -- is are you telling -- the way -- what we're doing is we were a group of -- you're a group of citizens. November -- you didn't know nothing about any of this stuff. All you knew what was you read in the paper. Whether the press reports were true. The press reported that at Fernauld, oatmeal was laced with radioactive materials, right? Okay. Yes, no, who knows, right? You're going to go look into this. Now, the other way of doing it, are you going -- are we then going to assert what? That we have found that Fernauld students were not laced, it was flavored or -- once you put the committee as a fact-finder into that, as opposed to this is the way it came about, then you get these very difficult questions about how do you convey adequately all the nuances, and, you know, we found that because somebody asked it, and there was a discussion, and, you know, how do you characterize -- DR. MACKLIN: I don't think you have -- I think you can characterize it accurately and non-judgmentally by simply describing and describing accurately based on the documents that this committee looked at, and the factual accuracy. Later, you get into questions, was this unsafe, was this too much risk, what are the -- what is this low level, but to say what was done -- I mean why do you have to say the press reported this was done, when we know in fact what was done, and those are the things that could prompt the reader to look and want to know, well, were these things bad things or routine things. MR. GUTTMAN: All I can say is that doing that will run you the risk of abstracting out precisely the nuances that people are going to say, well, how the heck can you possibly characterize it this way, and then you say, well, we really -- it's much more complex, and write 30 pages about it later. I mean if you could do it, you could do it, but I'm just -- how do you characterize the plutonium experiments? Somebody might say the plutonium -- people were injected without any informed consent. Well, Henry might say, well, it's a little more complex, right. So, I'm saying the things that you might want to abstract out to characterize and get the reader's interest might be precisely the ones that require the most -- I mean if you could do it, you could do, but it's just that I'm not sure it can be done. DR. STEVENSON: But in the paragraph going from Page 2 to 3 about plutonium, I think does that pretty well. You're saying it's very hard to do. I think you did reasonably well. MR. GUTTMAN: But I was quoting Eileen Welsome, not saying whether it was true. MS. KING: I would say that I would find -- Ruth will be shocked. She's known me longer than the rest of you. I would find one of two ways acceptable, because I see that trying to make us look for one way that's acceptable, that does not work. I would find acceptable an approach that started with what led to the creation of the committee and the kinds of questions that were raised and how we entered into that. That's acceptable to me. I would also find acceptable an attempt to take a shortened version of Pages 14 to 18, starting, and then going into this. I could live with either. I think that what I care about most, and I've been going through the chapter, it seems to me the rest of the chapter, editing issues still remaining, does what an introduction ought to do. It should be some discussion of the committee's task, how we approached the task. All those things, I find fine. So, the question is what to wrap them in, and I'm willing to wrap them in one of two ways, but I just think we should clearly carry it through. MR. GUTTMAN: Pat, where does the Nuremberg fit into what you said? MS. KING: Well, I think it doesn't work so well with the approach that starts with Eileen -- that starts with the events that led to the commission. If you take that approach, then Nuremberg tends to drop out, which is why I like my -- I prefer the version that tries to rework Pages 14, make it shorter and crisper, because I think you can work in Nuremberg principles in that approach. But the Nuremberg itself in my way of thinking, as written here anyway, -- MR. GUTTMAN: Well, let me try it this way. How about a -- let me try a compromise here. In the Eileen Welsome reprint series, Nuremberg was the cover. Would you say that one of the questions that Eileen Welsome asks in the -- DR. FADEN: I think this is getting to the core question that Pat's posing. Okay. Is this a story about Nuremberg or is it a story about the American experience and which Nuremberg figures? Okay. And what we're hearing is this is a story -- this is an American story, in which the Nuremberg principles figure, but because it's an American story, it's not a comparative story, it's an American story, you don't lead with Nuremberg. Okay? Nuremberg emerges -- the Nuremberg principles emerge because they are relevant facts, and also because, as you pointed out numerous times, an informed or sophisticated citizen would say but didn't they have the Nuremberg Code, and why did they do all this stuff if the Nuremberg Code was there, and that's the launching point for all of the more subtle stuff about, gee, what was the inner play here, but that's not the reason the committee was started. Gee, it looks like -- MR. GUTTMAN: No, no, no, no, no. My point is a more subtle one, I hope, is that one of the questions that was raised by all the press stories that started the committee was, gee, -- DR. FADEN: That was not the first question, Dan. It wasn't even the second question. I am still attracted to the historical puzzles, and I can easily get seduced into a whole discussion about the Nuremberg this, because it's extremely fascinating, but the point is this is -- if you go back to the themes that emerges largely, we agree, is why should the American people care about this whole thing, and they shouldn't care because the Nuremberg Code was violated. They should care because there are issues about -- MR. GUTTMAN: Right. DR. FADEN: -- trust in government, about expectations about the American government ought to compel it, ought to conduct itself. It looks like maybe the American government didn't conduct itself as it ought to, and it looks like maybe there are lingering issues today, all of which, we should really worry about. I keep -- when Reed said what he said, I kept thinking about the worst retort in my seven-year old's play group they can say to one another is I don't care. I mean that's like the worst thing one kid can say to another kid these days. I don't know where that comes from, and it's like five to six-year olds, I don't care, and we're trying to -- why should you care about this report? MR. GUTTMAN: Because this is the kind of report that 67-year olds will really care about. DR. FADEN: The problem is we don't want them to be the kind of report that only people who are, you know, so deeply embedded in the scholarly questions care about. We're not writing this for the 28 people in the world who are scholars in this arena, whatever the arena happens to be. So, it's a point I can -- this is important to me because it's shaking me up, you know, in terms of what I've been -- it's a forest for trees problem, too, but I think this is terribly -- MR. GUTTMAN: Whatever works. I'm not going to ask Steve what the press said. DR. FADEN: I mean it's not that -- if people said this is wrong, they didn't say it's wrong because somebody violated the Nuremberg Code, they thought it was wrong. MR. GUTTMAN: What you're just saying, Ruth, about the Nuremberg Code is really well put. The assertion of what anybody would say when asked the question. DR. STEVENSON: Right, right. Without even knowing that it -- DR. FADEN: Right. And in that sense, it has appeal to the Constitution. Reed? DR. TUCKSON: And also, just given the contemporary climate into which our report is going to be received with the enormous attention now to correct codes of behavior in very -- without real clear-cut determinations of what those correctnesses are, how does one behave in a public position today, when the rules are all weird and changing and the scrutiny is all different, and the point I get to is that what's -- I think at least where -- how I come at it is what's important about the Nuremberg Code is -- and what's compelling about it, is that it is not an absolute document that we can use. It is an important -- it is the defining document. It's the place that you start from. I think we've learned that. What's important is that if that answered all the questions, and we could just go back and say all right, check everything back to the Nuremberg Code, right/wrong, right/wrong, tabulate it, we're out of here, and the fact that we can't do that is really what's important here, and, so, it is the subtleties of why that doesn't answer the questions, and then the question -- and the issue really becomes how do -- and we've got to be -- it is very transparent, how do reasonable -- assuming that we are reasonable, how do reasonable people arrive at conclusions in areas that are not crystal clear, but that you have to build a case for it, and I think that that is really -- that is the American story here, is how do our systems work or not work, and how should they be expected to work when there is not absolute clarity, but there are reasonable agreements around big principles? And I think that that's why the Nuremberg story is not -- it's only the starting point. DR. FADEN: Can I suggest that we take a break? And then we'll take a break, we'll come back at 11, and we'll do Chapter 2, and then we'll begin the rest of the work. (Whereupon, a recess was taken.) DR. FADEN: Committee members, we're going to come to the table. We'll start. Jay. (Pause) DR. FADEN: Okay. We're going to do -- just so we can get clear on what the schedule will be, we'll do this chapter, and assuming it takes roughly the same amount of time, we will then break for lunch. We might break a little bit earlier. Instead of 12:30, break at 12:15, and then we'll do the forward- looking -- the backward-looking recommendations part, as much of it as we can today, and then continue tomorrow, and I want to reiterate what I said yesterday. As we anticipate discussing recommendations, and that is these will be discussions of recommendations. This will not be closure or voting on recommendations, because that really would be inappropriate because we don't have our findings in yet. So, this is generally a discussion to see which -- the sense of the committee about which ones of these are worth pursuing and which ones of these are not. Are they coherent? Which ones should be chopped? Which ones are we missing? What kinds of more information do we need in order to reach agreement about whether they're worthy recommendations and so on? It's still a terribly important discussion, even though it won't be the determinative discussion. It's important that we have it so that we, the staff, can do whatever it needs to do to give us whatever we need to know, so that we can in the near future finally decide what we want to recommend. So, given the way this committee likes to operate, it likes to see stuff in front of it, there is now stuff in front of you to which you can react, and the -- and that will start after lunch as opposed to this morning. So, the other chapter that we were asked to look at today is also Dan's. Poor Dan. The point person for -- and that's Part 1, Chapter 2, now titled "The Atomic Century". MR. GUTTMAN: Something like that. Gil did all the science, you can rest assured. DR. FADEN: Our friendly atom. This is the chapter that begins "Our friendly atom". So, the floor is now open for discussions or comments. I've got my pad ready to take hands. MR. GUTTMAN: This is obviously a draft to see whether the structure and the general way of doing it is acceptable and not a final. DR. FADEN: All of this is? MR. GUTTMAN: Yeah. DR. FADEN: All of this is in that spirit. Henry's got -- Susan, did you want to comment, too? DR. LEDERER: I just have a question. Is Chapter 2 and 2-A, will these be -- MR. GUTTMAN: No. The question we had, we -- the -- we all agreed that there should be a lot of the testimony we've heard in there, and the question we all agreed should be in the actual substantive chapters. The question is should there also be a stand-alone, those of you who remember Studs Terkel type chapter, and forget the number. It would presumably in my mind come right after the introduction, because in essence you're having sort of the people we've heard speak after the introduction, then you're having the unveiling of the big panorama of all this stuff that they're talking about. DR. FADEN: So, what I would like to do sort of in line with that is have a separate short discussion on 2-A. Basically, this is thrown out so that the committee can see what such a chapter could look like. MR. GUTTMAN: Hypothetically, yeah, if you can do it. DR. FADEN: It doesn't necessarily mean that these are the -- you would have this testimony exhibited and no other testimony, but generally to get a sense of the committee's reactions to having a chapter devoted to reporting excerpts of public testimony as opposed to an oral history as opposed to -- well, not the oral history part, but as opposed to using the testimony and pulling it in throughout the chapters, in addition to pulling it into the chapters. So, we'll hold that off and either do it just before lunch, if we run out of time on this, or just after lunch, but it's not -- to line-by-line on that one yet, but just to see is it worth investing energy. Does the committee want to construct these stand-alone chapters that speaks in the voices of people who have spoken to us? So, we'll hold that discussion for a little bit. Henry, you've got the floor on Part 1, Chapter 2. DR. ROYAL: I feel really peculiar talking about literary devices, but I guess that's what I'm going to do. The use of Walt Disney as the literary device to talk about the world of the atom, I don't think is going to fly with some segments of the readership. I suspect that there will be comments like that it's a Mickey Mouse report. So, I think there's going to be a segment of the audience that you're going to offend by using comic book characters to discuss issues which they feel are important issues. MR. GUTTMAN: Fair enough, but I would counter that by saying that one of the best descriptions -- most comprehensible description of the tracer, I think, was in Walt Disney's, and that is how the public gets educated, we all get educated. DR. ROYAL: Just be forewarned that the scientific community is not going to have a great deal of respect for Walt Disney's opinion about it. MR. GUTTMAN: Well, Henry, you know who wrote that book? DR. ROYAL: Heinz Hebert. MR. GUTTMAN: Right. One of the German Operation Paper Clip -- DR. ROYAL: Never heard of him before, other than -- MR. GUTTMAN: He is a major figure. He's a figure in our story. He was at the School of Aviation Medicine. DR. ROYAL: I've made my comment as clearly as I can make it. MR. GUTTMAN: Okay. DR. FADEN: Okay. That is important, Henry. People find this -- before we go into general discussion, concerned about beginning with the atom. Mary Ann doesn't like our friendly atom either. DR. GLATSTEIN: I didn't find it objectionable. DR. MACKLIN: I didn't find it objectionable. DR. GLATSTEIN: We're all Mighty Mouse. DR. MACKLIN: But Henry's comment, and I read that footnote, too, and I found it really fascinating. DR. FADEN: Isn't it, though? DR. MACKLIN: Why is that in a footnote? I mean one way of hooking up the story and the central part of what we're doing with Walt Disney, if we come to some consensus, is who wrote this, not one of Walt Disney's cartoon writers, but a German scientist, who then became involved in Operation Paper Clip. So, I mean it has much more integral part of this story, if it's pulled out of the -- out of a footnote, which some people may read and others may not care about, but it clearly relegates it to a position of much lesser importance. So, I think if it's in there, that fact is integral in a way to the story. MR. GUTTMAN: Right. But that would have been -- the same problem with the Nuremberg problem. You don't want to distract and throw off by putting that obviously inflammatory kind of -- right. We're trying to -- we're doing research now on the whole Paper Clip business, and John hopes to report at the next meeting on what he's found, and we'll have a fuller Paper Clip. I just put that -- DR. MACKLIN: Well, would it distract? I mean you're saying here's a fact. Who wrote these things about Walt Disney in 1956? MR. GUTTMAN: Right. DR. MACKLIN: Someone who had been a German scientist came to this country and was involved in one of the very projects that this report is about. DR. LEDERER: Isn't this one of our themes, the way in which the public and the professional stories kind of fold together and interact? MR. GUTTMAN: Right. Then I'm sort of jumping down and sympathizing with Henry. Then it's sort of a distraction put up front. Actually, I thought Walt Disney was actually a tribute because it was a popular educator. What that book is about is how terrific science is. DR. STEVENSON: I think it's really an interesting comment. I'm just not sure I'd start my chapter with it. MR. GUTTMAN: Okay, okay. DR. STEVENSON: I don't see where it's necessarily the way to start. MR. GUTTMAN: Okay. Well, you've got to start somewhere. DR. OLEINICK: I mean a good start is on Page 3 here, radioactivity has existed in nature from the dawn of time, and then on and on and on from that. MR. GUTTMAN: Well, then our editor, Sarah, says you need to have -- when you're dealing with material as dense as what we've got here, you've got to have a road map, and you can't just get it, you know, -- DR. FADEN: Well, the beginning doesn't let -- I mean, you know, it's -- I think this is going to be attention all the way through. I'm remarking -- thinking about Henry's comment about worrying about hooks and all that kind of stuff. I actually don't think it's wrong to worry about how to engage the reader, but I think that you can't trade off what you want to say in the interests of attracting a lay reader. So, I think it's fine to -- the challenge is to find ways to pull in the lay -- the -- the educated lay public, the kind of person we hope to reach by this, and that may -- and that might be better accomplished by starting with Walt Disney, but on the other hand, if it -- if it conveys something that we don't want to convey, then that's problematic. So, the challenge is to find a way that is engaging, but at the same time speaks what we want it to say, and I don't think -- if this -- if this is too much of a -- if it's giving a message that somehow is inappropriate, then the search goes on for some other way to pull a lay person in. I agree that the lay audience is not the only audience, but I think it's the most -- MR. GUTTMAN: Let me try another way. DR. FADEN: -- important audience. MR. GUTTMAN: Here's the problem. I have to -- my parents got me that book when I was 10. So, I'm wedded to it, and Ron Neumann wants to get it for his son. It's an incredible book. But the question you really have -- DR. FADEN: And you still didn't become a doctor. MR. GUTTMAN: Right. I didn't understand the concepts when it got beyond Walt Disney. The question you have is sort of Mary Ann's, how do you capture this kind of Cold War notion in a way that is not going to get 22 percent of the American public saying let's, you know, -- that's -- that's not -- you know, it's a very great difficulty of finding an adequate introduction to that period of our history that is not too polemic, it's not ideologically charged, I mean, and that was -- in that sense, Walt Disney is something that we all can relate to, and that was the nature of that, where it came from, and that it's not too obscure, and it's not too obscure, so that people will say who's that guy, you know. Yeah. DR. ROYAL: It is difficult for me to be objective about this because I find the topic of radiation experiments to be engaging in and of itself. I don't really feel that we need as many props as we might think that we need in order to engage the public, and if that were true, that is, that this is really a very compelling, interesting story in and of itself, that we don't need to use these literary devices, and if there's some down side to using the literary devices, then that's the argument against using them. MR. GUTTMAN: I didn't see this as a prop. I didn't see it as a prop. I saw this as an expression of this is the way the world was. This was a piece of historical evidence, not a prop. This is -- DR. FADEN: Right. That's probably a better way. MR. GUTTMAN: That was my point. I didn't see it as a prop at all. I couldn't find a better way to capture -- DR. STEVENSON: Right. No. I think it's very valuable. If it could just be maybe not the entree and maybe -- maybe soon in, but somehow -- it's a historical piece. It really is a period piece. MR. GUTTMAN: Yeah. DR. STEVENSON: That's what we're using it as. MR. GUTTMAN: Yeah. MS. KING: Henry raised a question which we have not dealt with. I have an answer for myself, but not one for everybody else. He raised the question of audience because, of course, all this turns on who you think you're reaching, and we have never discussed audiences, and all of us who have done IOM and National Academy of Sciences reports know at some point they make you respond to who is your audience, and I think that our audience is -- actually, as I keep saying, not ethicists, not scientists. Our audience is, I hope, American people, and I think that we bought into that because we keep referring to this as the story, and I think that that is telling, the way we keep referring -- maybe it's telling for me, maybe now you want to reconsider thinking of this as a story, but looked at from that point of view, I have no problem starting off with Walt Disney. I also have no problem referring to -- with putting two sentences before this, if you want to do that, to make the transition a little bit easier, but I would also say that I think Ruth's point is very important, about the footnote. Somehow that should be worked into the text, because it is a -- it tells us something in addition about the story that we are trying to tell. I also think that we do have to make it readable. We are people who like to read, I think, based on my interactions here for the last year with the members of this committee, but we are also -- DR. FADEN: We used to be able to read. MS. KING: I think that this is not the way a lot of people get their information, and it is increasingly not the way a lot of younger people get their information, that they're much more involved in the stories that they read, and I think that thinking about -- if it is a part of our story, this makes sense to do. I would add a footnote that we would come to this later, so we might as well surface it now, this has to have some of what people, professionals, would call graphics, and it can't all be charts because part of the report is that we can't adopt the format of a government report, but the style and language of something that speaks to a brought-up audience. So, the question, I don't know when you want to raise it, Ruth, but at some point, we need the discussion to make the audience and also to be realistic about what needs to go into -- it can't be all written text is what I'm trying to say. MR. GUTTMAN: Do you mean pictures or do you mean like boxes? MS. KING: It has to be -- I suspect that what I would do, my own inclination would be to do a variety. I have noticed that the boxes in certain places. Whatever is appropriate to the chapter, but I would -- in our textbook on Law, Science and Medicine, and Julie Green has done this with the Family Law book, we have cartoons. We have boxes. We have graphs. MR. GUTTMAN: Right. Time lines. All that stuff. MS. KING: Time lines. Just we ought to be thinking about -- MR. GUTTMAN: We are. MS. KING: -- using these terms, too. DR. FADEN: Can we just take that issue to the audience? Let's just take it for a minute and just see. I mean let's just see if we are on board on that. Obviously this has multiple audiences. This is being handed over to the inter- agency working group. So, that's an audience. We hope it will have impact with Congress and clearly that's largely true of staff members, and that's an audience. We have several scholarly and scientific communities also that are audiences, but I have been operating in the same fashion as Pat, that the primary audience for this volume is the American public, and perhaps we ought to see if that's an issue. Jay, and Henry. DR. KATZ: I think it would be a mistake to put it only in terms of that this is a report to the American people. It is an important way of thinking about it only or primarily in terms of our writing a report which so far it is, that is clearly written and is understandable, and therefore I would not -- if that is the message, that this is for the American people, fine, but this report is also addressed to policymakers and to Congress. It is a report addressing the medical community, and to the research community, and hopefully it is also a report that is addressed to students of the subjects. Of course, it can become an important document in teaching. But if we were only to address it to the American people, then large sections, for example, of the draft of the concluding chapters could be eliminated. DR. FADEN: No. I agree. I agree. DR. KATZ: So, I -- and you already touched on it, but it is also addressed to the American people, in my view, but not solely, but we need to be clear about it and see how we feel. DR. FADEN: Henry, and Eli. DR. ROYAL: I'd like everything. Two equally important goals, I think, are to tell the story, but another equally important and sometimes I might even say more important goal is to try to improve the system so that wrongs don't occur in the future, and if -- in order to support that goal, it -- this -- this report has to be directed at policy makers. Otherwise, that goal gets lost, and I guess if I were writing for an audience, what I would do is I would write it to the policymakers first, with the idea that I can then translate it, expand it, for the public, so that the final document actually would be useful for the public, but its design and the concepts would really be built around what it is we want this report to do. What goals are we trying to accomplish? And, again, if it's the goals that you're trying to accomplish, it seems to me that it's got to be very policymaker oriented. DR. FADEN: Eli? DR. GLATSTEIN: I just want to support Jay's point about the students. It seems to me that it's obviously intended for the public as a whole. It's obviously intended for policy makers and investigators, but I'd like to think that it would be a useful thing for someone to pick up, a motivated student, 50 years from now who would in fact be able to figure out what -- what happened in the post-World War II era that got us off track, and I think they have to have reasonable story told not only in terms of events but in terms of historical things that were going on that, you know, that those of us around the table, you know, hopefully recall, that they won't have that recall, and we've got to -- we have to tell a story that occurred in history and the setting of historical events. DR. FADEN: I'm not sure whether we have disagreement or we don't have disagreement, and I'm not sure that it matters a whole lot. We're going to go back and -- DR. GLATSTEIN: I think we are saying the same thing. DR. FADEN: Well, -- DR. GLATSTEIN: It's a broad audience that we're talking about that has multiple different motivating factors. MR. GUTTMAN: There is no simple answer. DR. GLATSTEIN: We have to aim at a broad audience. MR. GUTTMAN: Well, I think we might -- what you'll find as we struggle with this, you know, of course, you would say nobody's going to pick it up unless it's sexy, but then on the other hand, it's going to be the policymakers, and I think the summation you gave, Steve, the kind of draft you have when we get the plutonium chapter, and Steve said, you know, if somebody were interested in this topic, that person could actually read this and find it interesting, you know, it could be -- it's dry. It could be more exciting, but -- and, so, that's kind of standard. You struggle, and you do your best, and you try to make it readable, and you try to make it interesting, and then if you have more time, you make it, I guess, pizazzy. DR. GLATSTEIN: This is not going to get the Nobel prize for literature. DR. FADEN: Jay thinks so. MR. GUTTMAN: But look at -- MS. KING: The important thing here is if I were a policymaker, that's why I think that Ruth's point about the footnote is important, if you were a policymaker, you would learn something, even though it is Walt Disney, and that's the test, I think, for whether something is cutey or cutesy, whatever, you know, try to assess it, or whether you have tried to communicate in the best way you can some important points that you're trying to make, and that is the test by which I would try to judge this, and I think that it would pass my test and the points that Ruth was making about who authored this, not Walt Disney, is something that is important for policymakers to be focused on. It won't tell them what policy to adopt, but it will inform their understanding of when they start getting down to which policies to advocate. So, that would be the test. DR. FADEN: Shall we return to the chapter then? We're not resolving whether our friend the atom goes or stays or where he's placed, but I don't think we can do that here. DR. MACKLIN: I found the chapter clear, well organized, well written and interesting, and I had no critical comments. DR. FADEN: Thank you. Dan, what's wrong with that comment? MR. GUTTMAN: It was a preliminary draft, Ruth. DR. FADEN: That's great. That's -- other -- I mean that's good. Nancy? DR. OLEINICK: Well, I'd like to second what Ruth said. I liked reading this chapter a great deal. I thought it did what this chapter ought to do. I had only one very small but. This is a small one, but somewhere, and it maybe isn't in this chapter, we talked about this from time to time, there's just a concept that doesn't quite come through. We keep talking about human experiments as though -- because that's our charge, that's the only kind of experiment we ever need to mention, and again this came in the idea of accomplishments. The use of radio-isotopes has had implications for medical research and all kinds -- and many other kinds of research which even if it's not carried out on human material has implications for human physiology, and I'd like to see somewhere where the public or policymakers are informed about how useful radio-isotopes are. Maybe this isn't the chapter, but let me say something. For example, this doesn't require a re-working of the chapter. This is really small. MR. GUTTMAN: Yeah. DR. OLEINICK: But on Page 2, you talk about from the day the Atomic Energy Commission opened its doors, so forth, the human use of isotopes. The vast majority of the experiments were not done on humans. MR. GUTTMAN: That's a good point. DR. OLEINICK: Okay? MR. GUTTMAN: Right. DR. OLEINICK: Later on in the chapter some place, I can't remember, you talk -- you introduce Dr. Rosalyn Yalow. What she got the Nobel prize for was radio-immunoassay, and what's beautiful about that assay is that you can study human physiology without ever injecting an isotope into a human, and I thought that somehow that ought to come out. Whether it comes out here, in a box, somehow, I'm not sure. I'd like that to come out. MR. GUTTMAN: That's absolutely correct. That's -- this was written by a lawyer with Gil. Anything you have. The other thing I wanted to allay. I mean we have asked the agencies, Lily Engstrom is out there, to write up what they think their major contributions by whatever definition, and Lily is saying can we take more than three days to do it, and I said you can take four or five, and, so, that we hope to have, you know, somewhere, and the question is where and how, you know, you box it off, and this goes to Duncan's point yesterday, where the story of what has been accomplished. The CIA said take -- they called up Gary and said they didn't do any experiments, does the question still apply to them, but, you know, -- DR. GLATSTEIN: It's a minor point, but when you start talking about the Manhattan project, you label that Roman Numeral II, there is no Roman Numeral I that I can find. So, I'm not sure where you want to begin with this point. MR. GUTTMAN: All right. Okay. DR. GLATSTEIN: You have a number of other headings, where you can put it, it's just not here. MR. GUTTMAN: Right. DR. FADEN: Henry, I saw your hand. DR. ROYAL: We addressed this point yesterday. I just wanted to bring it up again. And that is that the chapter is really focused on radio-isotopes and very little is said about external -- treatment of cancer with external radiation, and -- MR. GUTTMAN: It's a deficiency. It should be remedied. DR. ROYAL: And it's peculiar because certainly from a risk point of view, the tracer experiments are -- have much smaller risk than the larger doses of radiation used with external beam, and somebody at some point had to start that before they knew what the results were going to be. It's -- so, it really is focused very much on radio- isotopes, and there's virtually nothing about how people have decided it was a good idea to treat cancer with radiation. MR. GUTTMAN: That's a deficiency of this writer. That's not a deficiency of Gil. Parenthetical comment. One of the things I think we'll add to this chapter, we've had a lot of expression of concern for the nasopharyngeal -- I think that fits in at the pre-war as an example of some -- that's not isotopic. That's -- I under -- that's another -- it's -- right, right. It's another -- DR. GLATSTEIN: Isotopes in proximity to the target location. MR. GUTTMAN: What's the best and most efficient way to talk to, Eli and Mary Ann or Nancy, just to get whatever has to be gotten into the chapter? What's the way to do it? DR. GLATSTEIN: Let me think about that. MR. GUTTMAN: You have -- DR. GLATSTEIN: I'll put something together for you. MR. GUTTMAN: Okay. That would be appreciated. I didn't mean to -- DR. GLATSTEIN: Bless you. MR. GUTTMAN: Just pull out your old textbooks. DR. GLATSTEIN: Well, actually, there's a terrific summary, I think, on this, sort of the history of the subject. MR. GUTTMAN: Eric Ball? DR. GLATSTEIN: No. An article in Seminars of Oncology about 1978 or so by Kaplan, and it's a great review of a number of different themes, but I think you'll find a lot in there. DR. ROYAL: I would be very interested in seeing that. DR. KATZ: What is that? The history? DR. GLATSTEIN: I'll try to chase that down. DR. FADEN: Just the briefing books alone is virtually tame in perpetuity. Major office space issue. Ruth? DR. MACKLIN: This is just a small point of locating things for the reader. The history is perfectly clear, and the dates are clear, but at times, one has to page backwards to find out exactly where something is taking place. Now, I'm thinking in particular at one point, it says Stafford Warren was at Rochester, and he was doing this and this at Rochester, and he was the head of this. Many pages later, there's a discussion of that stuff that was sprinkled around the alfalfa field near the medical school, and it doesn't -- and because Stafford Warren then later went to UCLA. I mean it's just that the reader, if the reader wants to know where was this taking place, even though it may say when, since it jumps back and forth a little bit, this happens in '46, then this happened in '47, I think it's just important that every point -- DR. GLATSTEIN: Unless you're Stafford Warren's mother, it is confusing. MR. GUTTMAN: Well, two points. Two points. This is a chapter obviously which would benefit from a time line among other things. That's obvious. The other thing -- DR. MACKLIN: And a map. MR. GUTTMAN: A map? DR. MACKLIN: Well, -- MR. GUTTMAN: The other thing that is an internal point, is one of the things that emerges is that as we go and -- it turns out we have such an extraordinary collection of letters written by Stafford Warren and Robert Stone. I mean we know from the diaries that the more you can actually turn these people into characters by Sarah and Michael's very carefully going back and saying where does this Stafford Warren story fit in, where do you get it more clearly across to the readers, and I think that will come out in the next drafts. You'll see more individuals that you can discern. DR. MACKLIN: No. I think it's good. I'm only saying that once things are located, if the reader is interested and shouldn't have to page back to see, wait a minute, where or when was this, because even though you have the time line, I mean that's a good thing, but I was joking about the maps, but I mean you may not know where Stafford Warren was at the moment that the alfalfa field was being sprinkled. MR. GUTTMAN: That's right. Okay. DR. FADEN: Reed? DR. TUCKSON: I want to come back to this issue of -- and I don't want to -- I hate to drag us back to it, but this issue of the audience. I found that I like the little atom Disney quote, and I thought it was important, and the reason is this, and, by the way, I appreciate and respect Henry's point, because I mean I understand that there are some folks with -- who -- we have to be honest. I mean there are researchers who have no sense of irony, who have no sense of humor, and who really are narrow. I mean they are. I mean and he's right. Somebody will crack a joke. But that's -- the issue is -- DR. FADEN: But then they won't get it. DR. TUCKSON: But the point being that what this chapter does not do that I think it wants to do and it should do and could do, it starts out trying to do with its quote is, it's respecting all those people that came to testify in front of us, how they feel and felt about radiation, and what their understanding is and was and will be, is extremely important for us, and, so, one audience that must be respected are the thousands and thousands of veterans whose families are scared to death, and who testified, and all those folks with the -- you know, I mean you know how many there are out there, the Cincinnati folk, all those people. That's an audience, too. What's important is, is to also trace what they thought over time this was all about, and, so, that the Walt Disney's book is darn important or whatever else it is that was the -- that defined the popular culture understanding of the time. Similarly, when we finally do talk about the greatest radiation mystery public fear and misunderstanding, it is important to use secondary sources, i.e. what did people in power think, because it is extremely important historically to know what they thought the perception of the public was because they in fact used that perception to make decisions, and we have to analyze that. What's also important to me is primary source. What did people of the time think? Because not only is that important for understanding history, but it also tells us how we get to where we are today. The way in which people will view our conclusions and our remedies or whatever or instructions will be very much based on where they are now with their perception of the danger of this invisible stuff, and that comes from a historical perspective as well. MR. GUTTMAN: Can I ask Reed a question? One thing that's clearly not in here that -- it's in there for the pre-war period, pre-World War II but not for the post, is this popular culture. There's not as much of that in there. That's something that we have -- you know, we have to look at -- we got pulling secondary sources. The question about whether the people that we're hearing from should be in there, the way I have conceived it, is you really sort of want to have an undiluted statement of the people we're hearing from, and, you know, that's the notion of this other Chapter 2-A. DR. FADEN: We'll get to that. MR. GUTTMAN: Right. But the question, the question is, can you -- do you want to mix them? Do you want to try to mix them? DR. TUCKSON: No. I think what I'm suggesting, I'm not suggesting at all, and I don't know whether or not my statement takes us down that road, I'm not suggesting at all that we here from them in this particular section, only that we realize that they are part of this, and that we need to understand the public's perception from a primary source point of view over this period of time because their opinions are just as important as the perceptions of what their opinions were by those that were making decisions, and, finally, as I say, at the end, when we finally get to the end of this story, how people in America feel who are not policy wonks, who are not scientists, but who have an extremely important stake in this deal, how they view it now, we have to understand that, we have to understand how they viewed it based on Walt Disney's little cartoon or whoever else it was that was defining the public perceptions. DR. FADEN: Either we are all hungry or this report, this chapter was -- MR. GUTTMAN: Actually, Steve said it was 30 percent too long. DR. GLATSTEIN: For the time being, I wouldn't worry about length. You can edit it afterwards. MR. GUTTMAN: You hear that, Steve? MR. KLAIDMAN: I heard that he said he wouldn't worry about it for the time being. DR. GLATSTEIN: You can edit it after. MR. GUTTMAN: Well, in the future, my favorite audience is doctors. DR. GLATSTEIN: You'll regret that. DR. FADEN: Okay. Well, this is good. It is a good chapter. MR. GUTTMAN: Well, Gil was instrumental because if I tried to do any of this stuff without Gil. DR. FADEN: So, you have enough feedback to know -- and obviously written comments, all that, should -- you have enough feedback to go back to Gil, and hopefully Eli and Mary Ann can help you with some of the additional material. Lois? DR. GLATSTEIN: I'll get some material for you. MS. NORRIS: I just wanted to say that I, too, like this chapter a lot. For one thing, it points out some of the things that have been of great interest to me, if not concern. I do notice, however, throughout the several chapters that we've read, that you tend to use the word "soldiers" as a generic reference to military personnel, and that troubles me because if the reader happens to be a sailor or an air crewman or something, he's going to feel perhaps that he's been overlooked. MR. GUTTMAN: We had this discussion. Actually, this is actually things that we tried to think about. When I used -- when we used the word "soldiers", it's -- there are couple of cuts at this. One is there were situations where they were soldiers as opposed to -- MS. NORRIS: Hm-hmm, yes. MR. GUTTMAN: Right. So, otherwise, to say soldiers served -- you know, sailors and air -- these, you could use the word "service people", but service -- that -- tried service men, but that -- it's kind of bureaucratic. It doesn't kind of give you any kind of sense. Well, the next is service people, which is even, you know, less of the -- right. And then the third one is -- I don't think that any -- MS. NORRIS: Military personnel. MR. GUTTMAN: Well, military personnel sounds awfully kind of -- do you prefer to be called a sailor or a military personnel? I don't know. DR. FADEN: But the point is well taken. Lois is right. You can't use soldiers. MS. NORRIS: One more minor thing, again, and that is somewhere in here, you use the -- you refer to bone necrosis. That probably would not pass my inspection as an IRB member if for lay consumption. MR. GUTTMAN: Yes, we're going to have it -- right. That's -- the other thing I want to mention, nobody here commented -- Kathy Taylor commented. She objected vigorously to the use of the word "coed" in the 1944 story. I said that's what they were called back then, and that's something that you all didn't care for. What? Put it in quotes. Okay. DR. MACKLIN: Well, you also have a use of man and mankind, men. DR. FADEN: We are going to work on that. If that's what we're reduced to, we're in very good shape. I mean we will work on that stuff, but if that's what we're fighting over, we'll be fine. MS. NORRIS: That's why I took this time to make those points, because they are relatively minor, and I thought, well, if no one else has anything to say, I'll speak up. DR. FADEN: I think the soldiers one is actually a little more important because that's more likely to go unaddressed than the gender issues, where we -- if we have enough people reviewing it, eventually that will be cleaned up, I think. The soldier one had slipped because it sounds easier to say that members of the Armed Services. MS. NORRIS: It is, and it becomes clumsy -- the alternatives are clumsy, but, nonetheless, -- DR. FADEN: They need to be addressed. MS. NORRIS: -- it could be a problem. DR. FADEN: All right. Well, it looks like this should make you feel better about the first chapter. Why don't you work on that one? Can we then move to this question of whether we should -- we'll have lunch, and then we'll do the -- what we used to call remedies section, to the question of whether we are currently inclined to want to have a stand-alone chapter that's excerpts of personal testimony or not? It was in your blue -- you haven't seen it? I thought people got it. I forgot it wasn't -- for those -- okay. Ruth? DR. MACKLIN: I have the sense that it doesn't work as a chapter, as a chapter. Each excerpt, each little story, is compelling, but I don't see it as a chapter at all because it leaps around without context. I think each one of these extracted and put into the appropriate chapter would be absolutely wonderful because it will give not only the flavor and the texture but the actual substance and the personal -- it will personalize what the witnesses said to this committee. But extracted like this, it was like an anecdotal list, and I think seeing it in context off the relevant chapters will make -- help make those chapters come alive. So, that's my observation. DR. FADEN: Lois? MS. NORRIS: I have a question. Do you have to get permission from these individuals to print their spoken testimony? MR. GUTTMAN: Gee, I hope not. DR. FADEN: It was on the public record. MS. NORRIS: Well, what troubles me is just as I do not want to see the transcript of what I say in these meetings, which I admit is not very much, it -- you know, the incomplete sentence and all the warts that accompany emotion and -- DR. FADEN: That's a good point. MS. NORRIS: -- trauma are apparent, and these were very eloquent statements. They were very moving statements, and when you read these words and with all the warts, that -- the image gets lost. DR. FADEN: That's a good point. Duncan? DR. THOMAS: I understand where Ruth is coming from about the need for context, but for me, this chapter does work, and what it conveys to me is a sense of pain. The range of feelings that we heard, and to have it all put together into one place makes a very powerful statement. DR. FADEN: Eli, and Pat. DR. GLATSTEIN: I think this could work either taking the individual comments and using them as the introduction to chapters or to have them in one spot as an appendix, that people would want to read the commentary as commentary in detail. I think either way, it could work. I personally prefer the idea of taking the appropriate public testimony and using it as an introduction to the chapter, but I think it could work either way. DR. FADEN: I've got Pat. DR. GLATSTEIN: But I think it should be in there. DR. FADEN: Okay. Let me just see if I've got all -- Eli, Pat, Sue, Henry and Nancy, if I've got everybody, and Reed. I'm sorry. Okay. MS. KING: I essentially agree with Eli. This is -- this is a question that often arises where you take testimony, particularly lengthy testimony. The purpose of taking testimony, I think, or at least one of the purposes is so that you get information that sheds light on what you are doing, and therefore I always initially go to the question of then it must be incorporated in what you finally produce in appropriate places. So, that's Ruth's point about context. I think that polishing it as a chapter in the report itself, in addition to doing it first, and I also agree with you that one way to get context is to use this introduction to the chapters as well. The -- including it as a separate chapter in the body of the report, however, as distinct from the appendix may give rise to questions that we ought to think about. One of the implications is, the up side, is Duncan's point that it conveys pain. The down side is that people look at it and say this is a bunch of emotional -- I can't think -- the terms that I can think of I don't want to say on the record, but the people who were swayed unduly in their judgments about this kind of testimony, which was impassioned. My own view is we are somewhere in the middle on that. We ought -- we should be swayed. We should be -- we should listen, and it should inform, and it should therefore be incorporated, but at the same time, we have to clearly send the message that we looked at a lot of things and listened to many different kinds of evidence, and it is the hope, and, so, for me, publishing it as a chapter sort of distorts this tone I'm trying to strike, but I think that to make it available, which could be another purpose, for other generations can be accomplished by making it an appendix because I can see why that would work, too. I would hate to see it as a separate chapter in the body of the report. DR. FADEN: I've got Duncan. Sue? DR. LEDERER: Well, actually, my question is somewhat different. I was hoping that maybe Steve or Lanny could inform me about selection criteria that they used to choose these particular testimonies that they've chosen. Obviously many more people spoke to us. What formed your selection process? MR. KELLER: At one level, what read well was selected. There were in fact some very good statements that for the reasons Lois mentioned just didn't read dreadfully well. There were also -- this is very much of a very early iteration of this. So, a number of people suggested stuff. There were a number of scientists' statements that might be included or might not be. So, in that sense, there could be a number of other subjects drawn in, but the idea was to keep it reasonably short and something that people could reasonably read and capture a fairly good cross section. DR. LEDERER: I guess my one concern is that many people have spoken to us. Are they being left out once again from sort of the record, and maybe somewhere in here should be that we couldn't include all the statements, and they would be in the appendix? MR. GUTTMAN: What we could do, we could actually have an appendix listing, because Lanny has already done for the meeting summary, -- or just in the appendix that the following people, and the one sentence of what they talked about. There's no reason, other than page, you know, that you couldn't put an appendix with all the 250 people and what they -- you know, so, we have it in the minutes. MR. KELLER: Yeah, yeah. Clearly, I think that the companion volume should, in some way, reflect a much wider representative sample. DR. LEDERER: Well, because those people might legitimately ask, well, why didn't you include my testimony. MR. KELLER: Well, but we have that anyway. That's the problem we have in every one of these -- MS. KING: You don't have it when you insert testimony into the body of the report in bits and pieces, where it is provided a context, because that is why -- the context tells us why it was selected. You do have that problem when you try to do it as a total -- MR. GUTTMAN: Here is my question. The sentiment seems to be -- we're agnostic, you know, but here it is. You can do this real easily. That stand-alone chapter is not a good idea. The reason to me that I can't quite put a principle basis on it that it seems important is that when you start trying to say, well, let's just put this in the individual chapters, which, of course, certainly makes the most sense, our priority, then you get into this fairness and balancing question in a much more dramatic way. MS. KING: I think it's the other way around. MR. GUTTMAN: Well, okay, because you've got -- because we have gaps in evidence. You know, you have people -- in other words, we have situations where people will say things, and we just don't know. I mean -- so, you say, and what's the impression? In other words, that doctor so and so did this, and it was an outrage, and it was terrible, and doctor so and so has been dead for 30 years, and we don't -- you know, and how do you -- what is -- MR. FEINBERG: We ought to be able to go to a volume and get all of the testimony. MR. GUTTMAN: Yeah. MR. FEINBERG: Taking some of that testimony and disbursing it into the body of the report, I mean I can't -- I'm -- I don't really think there's much likelihood of a charge of foul or anything. DR. GLATSTEIN: I think if you -- well, the idea of giving the statements that are made is to give credence to the angst, the emotion, the pain, that sense of a breach of trust that we've talked about, and whether the testimony given is absolutely accurate in every way is not the issue. But to give a feeling of what people have experienced and what they think. MR. GUTTMAN: Well, that's my question. Does that do as well in either setting? DR. GLATSTEIN: I think it does very well to introduce each of those chapters. MR. GUTTMAN: Okay. DR. FADEN: Well, I think there's also an issue of trying to make the chapters human and real, and that's where hearing from people -- DR. GLATSTEIN: Put that in italics and the rest of it in normal type. DR. FADEN: Otherwise, we have to be mind-readers, and I know you can do both. So, I feel very strongly that we have to have a lot of the voices of people in the chapters. Whether we should have another chapter as well is at issue, but I think that if we don't have them in the chapters, the chapters are going -- run the risk of being very disembodied, as if these aren't real people on all sides who -- MR. KELLER: Ruth, if I might, but as a writer and an editor, it is very, very difficult to do, and there will be -- there will be considerable parts of this that will read like a government report, and I think that unusually in government reports, I think that this sort of chapter would give an unusual prominence to the people who have talked to us as participants, and that may be something that we want to do. DR. FADEN: I've got -- well, I think that's well taken. Let me just make sure that I've got -- Henry, Nancy, Reed, Duncan and Jay. So, Henry? DR. ROYAL: I'm in favor of incorporating the comments in the body of the report and not having selective people highlighted in a chapter for no -- where there are no clear selection criteria. I don't like the concept that we're going to tell people the reason that we put their testimony in the chapter and didn't put someone else's is because grammatically it was better or something. I just don't think that's a very good selection criteria. DR. FADEN: That's a problem. Nancy? You're right on that point. DR. KATZ: No. I wanted to go before because my question is to Reed. DR. FADEN: Okay. So, you want to go before Reed. So, Reed, you have to -- not only did you have to say what you wanted to say, but you have to say something to whatever Jay is going to say to you. Nancy, Jay, Reed. DR. OLEINICK: Okay. I would like to say that I would like to see the individual chapters have some of this testimony and whether it's done in italics or in a box or something, that's up to the editors, but one of the points that Lois brought up was the question about how the verbatim transcript is full of all the warts that, you know, we all have. I mean I don't want to see the transcript of anything I say, and I wonder -- DR. FADEN: Not if you're ever up for confirmation or anything. Then you definitely don't. DR. OLEINICK: Is it not possible to use paraphrases or does it have to be the complete verbatim transcript, verbatim statements of these individuals? I mean when we're quoting people elsewhere, not in this chapter, there's often a paraphrase and then a quotation and then another paraphrase and so forth, and can't we use that tool to try to smooth out the language? DR. FADEN: Is your comment on this point? MR. FEINBERG: Why don't we do what the Senate and House committees do? Allow these witnesses to get a copy of their statement and clean it up. DR. FADEN: Exactly. MR. GUTTMAN: That's fine. DR. FADEN: That's fine. MR. GUTTMAN: You get the ums and ahs out. DR. FADEN: Right. MR. GUTTMAN: I thought you were going to say what the Senators do, which is clean up their own comments on the Floor afterwards. MR. FEINBERG: Done a lot worse. But I think -- DR. OLEINICK: We all have to do that. DR. FADEN: Right. Wherever it shows up. We're going to give people the courtesy then of looking at their verbatim testimony and correcting it for -- DR. OLEINICK: Okay. That's one of the reasons I asked the question about permission, because it led into my next point. DR. FADEN: Thank you. Jay, and then Reed, and then Duncan. DR. KATZ: There are, of course, 15 ways of doing this chapter, and I won't enumerate them, is -- but Reed has thought so much about it, orchestrated so much about this, so I wish he would respond to a brief comment, because I think this chapter is a good one, and there should be an independent chapter somewhere that contains this material, because it gives voice to the people we have heard from, and one can initially in the introduction to this chapter say look, of course we have been selective, and we could not include everyone, and here are these voices, different kinds of voices, that also -- that communicated a great deal to us, and to just incorporate them into individual chapters while an alternative way of doing it is also reducing the impact that these voices had upon us, and I wonder what Reed has to say about this. DR. TUCKSON: Let me first appreciate the respect for asking me that way. I really want to take a more modest tone in my response, however, but I, first of all, I think I find myself coming to join, I think, with the general consensus, and here's what I think I'm hearing and how -- at least how I see it. First, the introduction, the first chapter, which is why should -- you know, how did this committee come to be, this committee came to be because of a very growing national perception that something was wrong. People were coming forward in a variety of ways of saying something is amiss here, and, so, in a very real sense, some of these comments are important as they begin to set the tone for that. Secondly, why should you care, Americans, about this report. You should care about it because you should care that Ms. Smith and her husband and, you know, either pick the case where it's so clear that her husband was wronged, no question about it, and that Ms. Smith cries every night because she lost her husband too darn soon, and that's important because that's part of your country, and that's part of why you care, and, so, that that testimony from that person is right at the beginning, right early on in this document. It's part of the compelling reason for why we're doing this. I think, secondly, in the bodies of the chapters, where appropriate, I think absolutely, I agree with everybody else that said it better than I could say it, except I would add one other thing. In addition to the compelling nature and the contextual relationship, I would like us to face up square away with the dilemma that says we don't know sometimes whether it was true, and I think that we have to square up, look it right in the eye, and say Scientist X in Cincinnati said that he got permission, and that these folks were terminal. Mrs. Jones's daughter came before us, and she said I saw my mother, she cleaned the house, she took care of all the kids, then she went to the clinic, though she wasn't half dead, she was working right up to the time. Issue. We cannot determine -- by the way, I don't mean to be so direct with that one case, because -- DR. FADEN: I understand what you're saying. DR. TUCKSON: But let's just take -- let's just say for, you know, for the generalization. Issue. We don't know whether the granddaughter of that lady was right or wrong. What we have to deal with (a) because she believes it to be true has a certain set of implications that means something as we finish this chapter, because whether she is actually really hurt or believes that she was hurt has a certain pain which has to be dealt with. I'm not talking about remedy. If there's no more than -- it has to be just put out there and dealt with. We couldn't ignore it, and, so, it has to be put in the chapter. Secondly, if in fact we cannot ever know and we don't know what to do, here is how we handle that. We must simply say at some level, we don't know the answer, and the way that we dealt with it was the following, because it cannot be known, and if you don't like the way we came out on it, then you argue with us, and if you do, you -- but let the chips fall where they may. We couldn't duck it because we had to deal with it. So, I think you have to for that reason put that kind of testimony in. Finally, and I'm sorry to be so long on it, is I do think, Jay, that there should be an independent chapter, but I don't think it ought to be like this. I think the independent chapter has to say as part of the process of our work, many Americans came to our meetings, traveled long distances, and I think we need to describe the categories of issues that they presented. We need to say to them that these are the things that are of concern to a large -- to a certain segment of Americans. There are people who are worried about radiation mining. There are people who came to us because of the veterans. There are people who came to us so forth and so on, and these are their issues, and I think at some point, we -- I would hope that we are able to present it in an analytic way, and so it captures some -- some reality, and at that point, -- and what's the purpose of it? Number 1, because it happened. Number 2, it gives the reader a general sense of what are the hot issues for Americans, and then what do we do with that, that's contained in the body of the report as we go forward. DR. FADEN: So, what I'm hearing you say is that we provide an analytic context for the testimony that's excerpted, and, so, there becomes a reason why people's testimony was selected, because they illustrate the considerations. So, you didn't get in because, you know, you could only put -- but, here -- it was not because it was compelling or because it was articulate, but because it illustrated the set -- MR. GUTTMAN: Just a sense -- Reed, I don't mean to put you on the spot, but it would be -- I mean how detailed -- DR. TUCKSON: Well, you've got what, ball parking it, I'm just trying to think, and I have no idea what we're saying. If you have 10 -- folks on ships, folks in test sites in Nevada. I mean -- DR. FADEN: I see what you're doing. Right. DR. TUCKSON: You've got 10 groups, and each group got -- each of them got a page, 10 pages. MR. GUTTMAN: In some respect, what that could serve as is Pat's road map for the committee. You're talking about where they're going to be addressed later on as well, and these are -- DR. FADEN: What you are saying, though, makes sense. If those things track to the case studies, okay, so we had testimony about these set of concerns and then the object of those concerns in chapter -- MR. GUTTMAN: This is where the committee tried to address it more. The committee didn't address this at all or whatever. DR. FADEN: I'm not sure it will work, but that's -- because we haven't talked about where this chapter goes. There's still the issue of whether we formulate it as Reed suggested, it's right up front, or it's an appendix or it's, you know, the third chapter or the fourth chapter. DR. OLEINICK: The first chapter in Part 2. DR. FADEN: Or the first chapter in Part 2 that sets off the case studies, and that -- I mean another way to go would be to see how satisfying -- how much of the material that comes from the testimony is incorporated in the chapters, because then you're going to get into a struggle of, you know, gee, who gets to use that quote, the drafter of the chapter on atomic vets or the drafter of the chapter that's doing the -- I've had that struggle on a more recent project, when we fought over -- MR. GUTTMAN: Well, just go hold another hearing, Reed, we need some more quotes. DR. TUCKSON: By the way, one of the other things, also, that this strategy -- and I forgot to say, and Ruth just kind of helps me here. There are some folks that may not -- whose issues may not make it into the report because it will be beyond what we see as our scope. This mechanism also allows us to say, and, you know, by saying we -- because we heard from all -- these are the groups, and we just kind of sequentially go through them, and by the way, America, you got to know that even though we couldn't deal with X, Y, Z, these are the issues that X, Y and Z present, and by the way, they got to be dealt with by somebody. DR. FADEN: That's actually important because I know we're struggling about where to put this. MR. GUTTMAN: The notion is sort of the president here had a party, and these are the -- the committee, and these are the people who came and testified, and this is what this -- for whatever -- you know, this is what they said. DR. FADEN: No, but I take Reed's suggestion more than that, that we're organizing -- that that chapter could serve an additional purpose, which is beyond organizing, to give us -- gives us a place to talk about the people who talked to us about stuff we can't comment on. DR. TUCKSON: That's right. DR. FADEN: And it gives us a way to at least bring their issues to the attention of the American people, say we couldn't deal with this, you know, it broke our hearts to hear these stories, but we couldn't do anything about it because it was outside of our mandate, and we just want to register out there that somebody should think about it. MS. KING: I'm unclear about something. This is a question for Reed. Where were you proposing that this go, Reed? That's the part I missed in your discussion. DR. TUCKSON: You mean this chapter? MS. KING: Yes. DR. TUCKSON: Where would it go? Oh, gosh, Pat. I just -- I don't -- let's see. I don't know. I've got to think about it. I would be just guessing. It wouldn't make any sense. I need to see the whole flow of the whole thing. DR. FADEN: It's a big problem. I mean, Nancy, when you were suggesting -- DR. OLEINICK: Well, that's just a suggestion. I don't know. DR. FADEN: I keep saying that when we keep getting back to this, you know, the world of Word Perfect, we can cope. I mean we can -- DR. OLEINICK: Right. DR. FADEN: But it's important because, you know, -- MR. GUTTMAN: See, the problem with putting it at the beginning of the case studies is that the beginning of the case studies, from our discussion, you're going to have to explain to the public how -- why the hell we organized all the case studies the way we did. You know, why didn't you just talk about children and this and this and this.? DR. FADEN: All right. Let's do this. Sorry, Pat. I'm still waiting to hear from Duncan, who's been -- MS. KING: Oh, I'm sorry. Then let Duncan speak. DR. FADEN: Duncan, and then, Pat, I'll put you back on the list. DR. THOMAS: I guess I support the idea that we could have a well-chosen quote at the beginning of every one of the chapters offset in italics as a sort of a dedication for that chapter. It helps humanize the chapters. But I still strongly believe we need this independent chapter for a number of reasons. One reason is that much of what we have heard maybe begs for some critical comment. A lot of the things we heard are perhaps not true, and, yet, to try to incorporate that kind of testimony into an analytic chapter absolutely requires then some commentary, and I don't want to be in the position of having to tell a particular individual who's testified before us that the -- his allegation of a particular health complaint is not plausibly related to his exposure or that so and so, the soldier's dose estimate, which he firmly believes, is just not a credible one. Putting it all in a chapter like this enables us to finesse that problem by saying this is what the public feels right or wrong, and we're not at this stage commenting on it. Now, I don't want to pussy-foot around this in the sense that we still need the analysis, but we can do the analysis in the analytic chapters in a generic fashion without having to respond to individual testimony. That's one reason why I favor that type of a chapter. The other is I mentioned earlier that this sets an impact that brings it all together, this over-whelming sense of pain that I felt reading this chapter, and I don't need to reiterate that. But the other recurrent feeling I've had throughout the public testimony is the incredible diversity of feeling that we're hearing. It's not just one problem that people are bringing to our attention. I don't mean by problem here a specific type of experiment, but the types of feelings which these experiments evoke, and the remarkable overlap from one experiment to another experiment. Here, we have people down wind of Fernald, and we have people who were subjects of TBI experiments, and they are feeling the same thing with regard to a number of universal themes about distrust of the government or anxiety about their future and so on. So, I actually think this chapter does a pretty good job of dealing with what was Reed's, I think, suggestion that the chapter needs an analytic focus. Analytic focus is that we have identified a dozen different themes in here, and then we take one or more quotes to illustrate each one of the themes. I think you did a good job of doing that. DR. FADEN: Pat, and Jay. MS. KING: When I was listening to Duncan, if the themes emerge with that kind of clarity, themes should be in the report, and the report should be illustrated by some quotations, which is -- to me, carries me back to not having it all together, but having it in a place where it has context. So, I won't depart from my first point, but my second point is reaction to Reed. I sort of liked some of the things that Reed was saying in part because anybody who pays a whole lot of attention now in the Academy, the themes of multi-culturalism and feminism are all open to suggestions about the role of the experiential knowledge. In part, that's what we're talking about, that when we listen to people who have experiences and perceptions, etc., what we're talking about is experiential knowledge and what that can - - how that can inform the rest of us. So, the -- there is a certain kind of appeal to having a chapter about testimony and trying to put an analytical framework on it, and I must say I'm absolutely intrigued because this is one of my inviting things in life about listening to people -- learning and listening to people talk. I have, however, real concerns about whether it can be done at all, and whether it can be done at this stage in our deliberations, and, so, I want to note that because I think that there -- it would be a dis-service if it were not done well. That's my point. MR. GUTTMAN: What is it? MS. KING: The it is to take what I see as a collection of testimonies of what people think, feel, what their knowledge, which we cannot verify or not verify for that matter, is -- it's what people told us, and some -- Reed's analysis really -- the way he was trying to play out of analysis, if you cut -- if you go to the bottom, it's really how can you use what is this experiential knowledge. What -- how does it inform the rest of us? And one of the things that informs the rest of us -- I mean I've heard a lot of things, that it informs us about distrust, it informs us about how pain radiates in the sense -- that's a bad word. It informs us -- DR. FADEN: I actually thought it was artful. MS. KING: I wasn't trying to make fun. It informs us about how harm is not isolated, how it can pass through generations, what kind of impact it has on people's lives. I mean there are lots of things that listening to people testify can inform you about, but the real thing is if you try to analyze it, that seems to be your analytical focus in some ways because you have to be telling us what you can learn. Why it is important to listen to people and not assume that as experts, you know it all. Why it is important to listen. What -- and, so, I don't want -- what I'm trying to say, maybe it's not coming through, is I actually think that's an important enterprise. I have -- I've been convinced of that for a very long time. I'm so convinced about its importance that I do have to underscore it with a hard question about can we do it. I would rather leave something as a record of all the testimony, so that somebody can come behind us and do it well, than to do it badly ourselves. That's the only point I want to note. DR. FADEN: Let me do this. I've got Jay, and Reed. Duncan, did you want to say something, too? DR. THOMAS: On her point. DR. FADEN: And also Dan wants to say something. So, why don't we have those four comments, and then we should close for lunch, so we have enough time to do what we need to do with the rest of this meeting. Duncan, do you want to respond immediately to Pat? DR. THOMAS: I'd like to, but I can hold it. DR. FADEN: Okay. Then, Jay. Jay is next, and then Dan, and then Reed, and then Duncan. DR. KATZ: Well, I like what Reed had to say, what Duncan had to say, and I appreciate the problems that Pat raised, and I still do not know, and it's not to be discussed now, what Reed meant by analysis, and the nature and extent of the analysis because if we become too analytic, except in the very superficial sense, in this chapter, that would, I think, diminish the impact and the quality of it, as Duncan suggested. I would -- I still think that it's important to make these voices heard, but I would also somehow say that it has to be carefully worded. That, of course, we didn't have the time to evaluate in all kinds of ways what these people told us. But one thing we can say, namely, because of the secretness and the deception and the lying and the invasions of governmental agencies, this kind -- whatever the matters are, people had to feel this way, irrespective of whether it transpired or not, the deeply-felt feelings and experiences comport with reality because when psychologically, whenever persons in authority behave the way persons behaved during the Cold War and even more recently, people had to attribute -- they couldn't trust, couldn't reveal anything that they heard, even if what they were told was correct. DR. FADEN: Dan, Reed, and Duncan, and then we will call it for lunch. MR. GUTTMAN: There are a couple of things. This is something we have been working on that's sort of coming out here, I think. There are two kinds of things we're struggling with. The testimony can be taken for the truth of what is being stated or that this was what someone said. Right? And one of the things that come up in the discussions, Ruth was sitting next to me when we were discussing the intentional release chapter last time, said, well, the story here is people -- when there's secrecy, there's a whole group of people that just don't trust whatever the hell's being said, and they got reason, and we don't know whether the radiation caused that or doesn't cause that, but there's a social disconnect, and there is a social reality. There is a truth that all these people are saying as a social fact of significance. Whether that is a statement about what radiation does or doesn't do is a separate issue. But that is a set of testimony that itself is a part of a chapter. The story is we have a social reality where there is a reason when we look at the situation, where we should be able to comprehend why there is this thing, whether it's a psychological manifestation or whatever you want to call it. It's a reality that exists now, independent of the particulars of the stated fact. Then we have other situations where someone says I was there, and they didn't tell me about consent. Whether they did or they didn't, who knows, right? So, what we're sort of not -- what is hidden behind this are the two kind of things which are obviously completely unrelated and the statement that people don't trust the government, but that there are things that were actually discerning, and one of the committee members said to me in the San Francisco hearing, he says, I don't know if what everybody is saying is true, but I know that there are so many people with so many heartfelt statements, that there's something there, and that set of statements, that piece of testimony becomes evidence that you weigh against this unknown, you know, what's the connection between radiation and their effect as opposed to particular, you know, sets of facts where you don't -- there's two kinds of -- two kinds of -- there are two kinds of things we're talking about here in using these statements. One is the intentional releases, the statements are evidence of facts of how people relate to this unknown. In other settings, they may be particular contentious facts, and we just don't know what reality is. Pat, am I -- am I making -- MS. KING: I think I would explain it the way you're explaining it, but I think I follow you. I think that -- but it still seems -- if I follow you correctly, it still breaks down in terms of this -- the sum total of the impressions is that we have destroyed a connection or linkage between people and their government, when things were conducted in secret, and you could never get to that other objective truth that you were talking about. MR. GUTTMAN: Right, right. MS. KING: Therefore, the testimony is evidence of the depth of that disconnect. MR. GUTTMAN: Yeah. MS. KING: Okay. But that is what I take you mean one kind. The other kind is the question of testimony that may go to trying to establish some empirical data, which we are not in a position to verify or not verify. My only -- is that what you're referring to? MR. GUTTMAN: Yeah. That's right. The person -- the stand-alone chapter would state -- that's right -- would stand for -- yeah. MS. KING: But that is what I disagree with. MR. GUTTMAN: Okay. MS. KING: I think a stand-alone chapter -- this is what the committee, I take it, is disagreeing about. MR. GUTTMAN: Okay. MS. KING: I think that that is conveyed -- that the best way to get over the first point about the disconnect, the testimony which -- is to incorporate it into a discussion about the secrecy, what it does, what it prevents you from doing, and incorporate testimony into that context. I have not been persuaded that having a stand-alone does that equally well. Now, one of the answers to this might be let's write it, and that we will see how it looks both ways, and we'll make a judgment about what -- DR. FADEN: I think we're going to have to do that, and we're going to have to look at the stand-alone one against what's in the chapters and then collectively reach some sort of consensus, but at this point, I think we're going to have to try to it. I do want to hear, though, from Reed and Duncan, and then if we don't have lunch soon, we don't have lunch. So, on the assumption that people want lunch, yeah. Reed? DR. TUCKSON: Very briefly. Two very small points. First, I think, Jay, you're right. I should -- I used a bad word when I used "analytic". I should have -- I think I meant more quantifiable rather than analysis. Secondly, just a small issue, just a reaction to something that Pat said, which intrigued me, and that is I just - - and I don't know what -- the answer is obviously brief, is that with the -- in the part of the report that deals with the future, we learn lessons from taking the testimony. If power during the time that the decisions were made wanted to avoid some of the bad outcomes, wanted to do the right thing, and were able to do that, then they should have taken testimony, contemporaneously. There are issues -- I know that when we are, for example, in my world, in medicine, when we are running neighborhood and community health centers, community residents are on the board. The human subjects review committee now, that movement says we have folk who are other than from community who are there informed, you know, Lois's role on this committee, saying we're here to listen and be a part of. The point being is that I wonder at some point or another if when we get to our -- some discussions about future protections and safeguards, that we will incorporate more than our emotional sentiment about these folk who came to speak to us, but that somehow or another that gets incorporated in as a profound sense of respect and a demand that the public is able to participate in the process in some way that prevents this kind of stuff from happening in the future. So, I just hope that it also gets involved somehow there, and I don't want to say anymore. DR. FADEN: Yeah, that's important, I think. That's very important. Duncan, you've got the last word before lunch. DR. THOMAS: Oh, Pat, I really understand what you're saying about the importance of context, about the importance of weaving the testimony into the broader themes that we're trying to say in each of our chapters. The point I was trying to make, however, is that many of the themes that I think this chapter illustrates are things which are quite disjointed from the categories of experiments that the chapters illustrate. They are broad things, like distrust. We don't have a chapter about distrust. We have a secrecy chapter, but that's not quite the same thing. We don't have a chapter about anxiety, about the loss of a loved one, about -- you have the idea of what I'm trying to say. MS. KING: But we should have paragraphs and pages in our -- this is going to be a bad report if we don't talk about distrust, and if we don't talk about anxiety, and if we don't talk about family defects somewhere throughout this report. DR. THOMAS: Sure we should. I agree with you 100 percent, but the question is that these things cut across experiments. People in a wide range of different experiments, all are feeling the same thing, and that's why I feel the need for a chapter which tries to integrate some of these feelings. MS. KING: I agree that they go beyond case studies, but that's not where I contemplated that they would be. DR. FADEN: All right. I will tell you what. We are going to try it both ways. Maybe there are three ways. We already have a first stab at independent chapters. So, now we'll redraft it. We will also work at putting in -- putting testimony in voice throughout the volume and see if we need this chapter when we see it constructed the other way. MS. KING: I will say I understand Duncan's last point because a little bit of the final chapter, I've been able to read -- I've been reading it while we were talking this morning, my notations throughout that chapter keep saying where is this, where is this, where is this. It's the kind of thing you're talking about. The remedies don't make sense unless you can talk about pain, fear, distrust, and I'm sure there must be other chapters where that's true, too, where -- and it should be in the report some place to be able to get to the final chapter. DR. FADEN: We -- a big chapter that's missing that isn't written obviously is the findings, the committee findings chapter doesn't exist yet. So, that's where presumably this will go. We are breaking for lunch, and where do people go for lunch? (Whereupon, at 12:30 p.m., the meeting was recessed, to reconvene this same day, Thursday, March 16th, 1995, at 1:30 p.m.) A F T E R N O O N S E S S I O N 1:30 p.m. Recommendations: Looking Backward DR. FADEN: We are now turning to the very, very first rough cut of what's here labelled the "final chapter", and let me just emphasize again, this is really -- this is about as sketchy a document as you could possibly have before you. It's got none of the context, none of the discussion. It's basically laying out ideas to get committee discussion going. Are we going in the right direction? The retrospective -- let me just set it up for a minute. The way this document is structured, it reflects discussions that have been on-going in the remedy subcommittee. Recommendations or suggestions for recommendations have come from individual committee members. Recommendations that have been suggested to us, and they resonate with our experience from some of the responses we've gotten to the letters that have been written to IRB chairs, tell us what's working, tell us what's not working, what would you like us to comment on, and so on. So, it's sort of the hodgepodge. In terms of a conceptual or substantive -- I'm beginning to lose the distinctions between conceptual, analytic, substantive. It's like every-thing is running together for me now. The stuff that matters, whatever kind of stuff that it is, this is something that matters in here. Basically, there's a view being presented, and I think that the first thing that it's important for the committee to debate is whether this view is correct. Ideally, this chapter should follow, and Dan started working on this, but it was so preliminary, the findings chapter, the chapter where the committee pulls it all together. We've got all the case studies. We've gone through the background stuff in Part 1, and in Part 2, we've got the case studies, and in Part 3, report the results of the contemporary -- our sense of the contemporary situation, and then, of course, what's missing is the chapter that says what does the committee think all of this means. What are our findings, what are our conclusions. That clearly needs to come before a chapter that says coming to terms with the past, looking ahead to the future, in which we report our recommendations. On the other hand, -- on the one hand, that's how it should be done. On the other hand, given the pace at which we're keeping, we're doing everything simultaneously, so we're leaping ahead, and we'll leap back and leap ahead. So, all of this has got to be iterative. The way this document is drafted, it assumes that at least one core finding already has been established, and that's expressed on Page 1, Line 4, the committee has found that the government failed to take adequate steps to protect the interests and rights of subjects in human radiation experiments. So, that finding presupposes -- I mean this draft presupposes that the committee will have concluded at least that finding on Lines 4 and 5 of this draft. There may be many other findings or more specific findings, but this is a statement that speaks to the -- comes from and speaks to the discussion we had over, I guess, two sessions, two committee meetings, about what the rights of -- the appropriate standards are for judging the conduct of the government, concluding that the AEC standards and the Wilson memo were appropriate standards, stood as and could be taken as appropriate standards for judging the conduct of the government, and then concluding that the government did not do what it should have done to implement and monitor those standards. So, that's the finding there. That's really the only firm finding. The only sort of finding on which the rest of this flows. That's an adequate -- but that's basically what stands behind this. So, I guess we don't want to take that on now, but if anyone says -- is not prepared yet to agree that the committee has reached this conclusion, we should probably hear that. All right. Then the second conclusion -- DR. ROYAL: Ruth? DR. FADEN: Yes? DR. ROYAL: Could I make a suggestion? DR. FADEN: Sure. DR. ROYAL: I'm not sure that I disagree with the conclusion. DR. FADEN: Okay. DR. ROYAL: But it could be stated in many different ways, and I suspect how it's stated will affect its impact. The way it's currently stated, it's unclear -- well, it's different than saying that the government could have done a better job, that saying it in that way has a different impact than saying it the way it's currently said. And I guess one of my concerns is I don't expect the government to be perfect, whoever the government is, nor do I expect any members sitting around this table to be perfect. That's not to say that we shouldn't always try to do better, but again I'm having -- I just have the trouble with the nuance between failing to do your duty and not having done as good of a job as could have been done in differentiating between those two things and what we really mean. The other comment I would make is it says subjects of human radiation experiments, which to me sounds like all human radiation experiments that the government failed to protect the interests and rights of the subjects, and I'm not sure that I agree with that construct. DR. FADEN: Okay. They are important points, both of them. Do we have -- I mean I guess what's on the table is do we want to take apart those two sentences, that sentence on 4 and 5, before we move further? There's a way in which it's sort of foundational. Yes, Ruth? DR. MACKLIN: I guess I find failed to take adequate steps to protect the interests and rights of subjects to be a relatively weak statement, and quite clearly -- I mean it doesn't say that -- anything about living up to an ideal. It doesn't even specify what the government's duty is. I think, Henry, you used the words doing its -- fulfilling its duty or its obligation. It says failed to take adequate steps to protect the interests and rights, and that just seems true. I don't think there's much nuance there. We could make it stronger. You could make it weaker. You know, could have done a better job, I think, are the words that you're using, but this seems to me not to over-state the way in which the government failed, failed to take adequate steps. We could specify steps that it could have taken, might have taken, and indeed some would argue ought to have taken. So, I for one don't think that's a very strong statement of the way in which the government failed. I'm not addressing the radiation part, just the failed to take adequate steps part. MS. KING: I agree with Ruth. But I think that the key to this, the wording and how we make these statements, is actually reference to the findings, which we don't have. So, I'm willing to pass this and go on to try to deal more with the rest of the chapter because I think that how 4 and 5 are going to be stated is actually going to be debated in that context. DR. FADEN: So, let's do that. I wanted to see how the significance of the line on 4 and 5, and also the line on 6, 7, that has an additional finding, which again let's hold off on seeing how much we agree with it until we have the whole before us, but the beginning of this is premised on the assumption that the committee will find a -- will reach a finding something like is expressed in that sentence on Lines 4 and 5, and something like the finding that is expressed on Lines 5, 6 and 7 about withholding, inappropriately withholding information from the public, however we ultimately word it. So, that signals that the people can be thinking about what findings in these areas -- each of us individually would find to be the appropriate expression. As we get into it more, there will likely be this whole chapter which will likely be the most difficult chapter for us to write collectively, which is the findings chapter. What do we find after trying to put all this together? So, with that as backdrop, the committee is going to conclude that in some respects, the government was remiss, here the language, failed to take adequate steps to protect the interests and rights of people in relation to human radiation experiments, and, secondly, that the government inappropriately withheld information about radiation-related research from the public during this period of interest that we are focusing on. The committee -- the logic here says the committee has adopted the three equally necessary and inseparable kinds of actions should be taken, and that -- then you get the three. Ruth? DR. MACKLIN: Even though it says three equally necessary and inseparable, I think the order in which they're presented is important, even though when you say equally necessary, either you string around equally or you got to present them in some order. DR. FADEN: Get rid of equally. DR. MACKLIN: I can try to justify what I'm now about to say, but I would propose that the order be exactly reversed. DR. FADEN: Okay. DR. MACKLIN: That is, that the third one, begins on Line 7 on Page 2, the government must accord a national apology to all persons who may have been wronged. That wouldn't be first. Followed by the take action to demonstrate that it's learned from the past and look to the future, which is also learning from the past and backward looking but also the future, and then, third, which is present and entirely future oriented and has to do with the record, that that one be third. So, that's just a proposal. I could try to justify it -- DR. FADEN: Well, please tell us why. It will help. DR. MACKLIN: Well, the thing that's most directly related to the first sentence -- to the statement that we were just discussing and presumably will agree with when it's all said and done, namely, failed to take adequate steps to protect the interests and rights of subjects, suggests the immediacy of the first step is to look at what is the natural thing to do when you have failed to take steps to protect the rights and interests, and the first thing is to look at those people and issue a national apology. I think the word should be issue, not accord, or give or something, make a national apology. I don't think accord is the right word for an apology, but, anyway, that's quibble. So, I think that's the step that most directly flows from finding that something wrong was done in the past. You apologize for that. The second -- and I'm also, I think, putting this in the order of what -- in some sense, order of importance; that is, suppose one of these things were not done, I mean not that we're going to recommend that they not -- but suppose they weren't. Are they truly equally important, such that if one of the -- somebody said unh-huh, you could only do two, which nobody's going to say, what's the order on which they should go. Taking actions to demonstrate that it's learned from the past, so these may be the enduring legacy and memorials, says something about how finding out these things should lead us to behave and to not only to remember but to protect in the future, and then the third, although I think this is true, I think the government must do more than assure. I think it must ensure because they can assure us of anything we want, but we're much more interested in ensuring that the story be recovered, etc. So, the third, although important, I mean I don't want to quibble or argue with the claim that they're equally necessary, but somehow if someone were to say which of these would be lopped off, I mean in the order of the wrongs done and what to do about those, I'd put them in the other order. DR. FADEN: Is there anyone who wants to argue that one of these three things should not be here? Order is one issue, and then the other issue is -- DR. MACKLIN: I'm assuming in my answer that they should -- DR. FADEN: I take it -- I take it that you're endorsing, and, again, this is not definitive. I'm not saying for all time, but for right now, is there anyone who is raising concerns about any of these? Henry? DR. ROYAL: One of the sources of distrust for the government is having the government not live up to its promises, and, so, I don't -- I don't want to make promises that we don't think are possible. So, for example, in the first statement, what does the phrase "as best as can now" -- "as best as it can now be" mean? For a given amount of effort, you uncover 50-60 percent of the past. If you double that effort, you get another 20 percent. If you double that effort, you get another 10 percent. So, there's this diminishing returns. So, I don't know what the "as best as it now can" means because I certainly wouldn't want the government to -- in order to fulfill this promise or in order to be perceived as fulfilling this promise, to divert all of its resources to uncovering what happened in the past. MR. GUTTMAN: One, it was in the sense of what Reed was saying earlier, that we in the agencies, you know, you gave us a year, and we did the best we could do, and that was the sense of it. Then, later on in the actual recommendations, we will try to be as specific as possible with explanations of why the devotion of resources and the time of scarcity should be devoted to those particular -- it's not an open-ended do everything without qualifications. It will be qualified by the recommendations that follow for a particular -- as we decide to do it. DR. FADEN: But we can work on that language, and those words are not -- DR. ROYAL: Yeah. I think that that's going to be very important in terms of the committee's recommendations, is to think them through in enough depth to have some idea of whether they're doable and at what cost. MR. GUTTMAN: Right. DR. ROYAL: Just not to have some -- not to propose some ideal that's going to be unattainable and then cause people to be even more frustrated with the government. DR. FADEN: Are there other comments? I'm very happy to move right into the next phase. I just want to make sure that we're going page-by-page here, and now, as I said earlier, signal if anybody's really unhappy with this. We're not saying we're signing off exactly on this language, but, rather, if anyone's objecting to the way in which it's being framed at this moment. (No response) DR. FADEN: Hearing that, let's go on. Okay. So, we're moving. Ruth? DR. MACKLIN: On Page 2, this is really a question for clarification, but -- and I hope it's not a quibble or a question merely about words, but I think it's important that I want to understand what is being said here. Line 13, the sentence, Page 2, after the first three, right, the -- at first, I thought you were moving on to the first -- DR. FADEN: No. Absolutely right. DR. MACKLIN: The first sentence, the sentence beginning on Line 13, "in addition, the committee further believes that additional responses are appropriate where persons were involved as subjects in traditional or bio-medical experiments." What's the distinction? What does traditional mean? What does bio-medical mean? What's -- MR. GUTTMAN: No, no, no. They were supposed to be the same. The point here was to distinguish from the intentional releases -- DR. FADEN: I think maybe the "or" wasn't supposed to be there, it was supposed to be a comma. MR. GUTTMAN: Yeah, yeah. DR. FADEN: I don't know that this is the best language, but we're somehow distinguishing -- DR. MACKLIN: Okay. MR. GUTTMAN: Yeah. DR. MACKLIN: All right. That's all that means? MR. GUTTMAN: Yeah, that's all it means. DR. MACKLIN: Okay. Just one other little verbal -- couple of small quibbles there. On Line 3, this is just moving up, "the past cannot be redone" -- same page. No. It's the same page. "The past cannot be redone." Do we want to say redone or undone? Pardon? DR. FADEN: Undone. DR. MACKLIN: Undone. DR. FADEN: Undone, yeah. I think I've had that ensure/assure discussion with you before, Ruth. DR. MACKLIN: Yes, we had it. DR. FADEN: I have that vague memory that -- DR. MACKLIN: Yes. DR. FADEN: -- we've had it before. MR. GUTTMAN: If you're lucky, you'll have it in the next committee. DR. FADEN: Please. DR. MACKLIN: The -- further down in that sentence, I mean line -- Sentence 3, there's one, two and three. These are the additional responses here. Number 3, I think we need to do somehow either a little more precise or -- the word protected is wrong. I mean I would insert the words "where the present and future health of citizens" because we really are here talking about things that -- DR. FADEN: Right. That's fine. DR. MACKLIN: -- will be done with present and future health, and now it says protected. Well, that may not capture everything we mean because it may not be possible to protect their present or future health, and yet there may be reasons for them to know even though it may not be possible to protect the health. I mean, again, it sounds like a verbal quibble, but I'm just -- DR. FADEN: No. DR. MACKLIN: -- concerned that we not be too narrow, that we not -- DR. FADEN: It's actually intentionally narrow. DR. MACKLIN: It is? DR. FADEN: Yeah. This is the language from the charter, and when you get to the discussion of notification, the charter specifically says that we're to consider notification to protect the health, notification in instances where such action - - you'll see when we get to the notification part, we'll be making a statement. DR. MACKLIN: Okay. DR. FADEN: So, if the committee wants to notify people for reasons other than, and you're quite right, protecting their present or future health, we may wish to do so, but it is -- this is responding specifically to the language in the charter and executive order. DR. MACKLIN: Okay. DR. FADEN: Ken? MR. FEINBERG: I just want to make a note on Page 2, Lines 13 through 16. I'm perfectly willing for the time being to go along with language that says that the committee believes additional responses are appropriate involving intentional releases of radiation as opposed to bio-medical experiments, but I don't know what those additional responses are. That, of course, is blank in this chapter. DR. FADEN: You noticed? MR. FEINBERG: And, you know, it's no secret that I've got great reservations about what we can possibly say beyond what we've already said in one, two and three, but if there's somebody who's going to come up with what those additional appropriate responses are in that context, I'll hear them. DR. FADEN: So, I'm hearing what you're saying, as the sentence stands open to whether there's something meaningful that in fact stands behind it, which -- MR. FEINBERG: No. I mean it's fine -- this paragraph is fine as far as I'm concerned as to bio-medical experiments. DR. FADEN: All right. MR. FEINBERG: These are the four categories where an additional response is appropriate, and that's the subject of the chapter. DR. FADEN: Right. MR. FEINBERG: But we also say in Line 15 that -- DR. FADEN: I understand what you're saying. MR. FEINBERG: -- intentional releases, and it's just blank on Page 7 or 8 or whatever it is. DR. FADEN: Because we haven't gotten there yet. We're reserving the -- MR. FEINBERG: I don't know what those responses can possibly be. DR. FADEN: Reed, Duncan, Lois. If I'm missing people, let me know. DR. TUCKSON: On that very same set of lines, the addition on Line 16 of exposure by the government and study, is that -- am I to -- is that also similar to the point -- Ken's point that if you are part of -- well, put at risk for radiation exposure but were not studied, then you don't -- that that moves you out of our purview? Is that our understanding of that? DR. FADEN: That's how it would be read now. I mean that was code language. I think Dan has -- but I think that that language to signal or cover what we had been calling experiments of opportunity, and whether the -- Ken is right, and you're following up, Reed, that clearly in this draft, those territories are not mapped out here. The specific responses are not in this draft. So, I don't know that -- yeah, if you read it the way it would read, it would -- it would certainly read that way. That was language to try to replace what we were calling experiments of opportunity. But we don't have any recommendations yet for that context. DR. TUCKSON: So, that's just -- we're basing our -- walk down the road and see where it leads. Is that what we're doing? Then come back to that, those issues? DR. FADEN: For lack of anything else at the moment. For the lack of anything else. So, if we can go through the territory where we've got something, to see how much agreement, disagreement, how much more work we need to do, and then the next iteration, and presumably it would be before the next committee meeting, that people would be looking at things in relation to filling in the holes here and seeing where things would go. DR. TUCKSON: All right. So, let me just make sure. Some examples. The guy who talked to us about getting on the ship in New York -- oh, I'm sorry. That wasn't the full committee. Never mind. DR. FADEN: No, it wasn't. Okay. We'll talk about that later. DR. TUCKSON: That's all right. DR. FADEN: But I think it's important for people to be thinking about examples like that, saying, gee, if we craft it this way, it will present X and not Y, and are we wanting it to do that. That exercise, I think, should be always on-going. Okay. Can we move further down? Oh, I'm sorry. I have Duncan, Lois, and now Henry. Duncan? DR. THOMAS: This paragraph and the five or six pages which follow are clearly limited to the bio-medical experiments, and under that heading, we have four things that are called situations, and the situations are things like government withheld information, people were harmed, people want to find out about their loved ones, so on. We might want to notify. Then we get down to Page 8, and we get situations, 5, 6 and 7, which are presently blank, but my problem is that 5, 6 and 7 are the different classes of intentional releases, and they're no where near parallel to the situations 1, 2, 3 and 4. Indeed, I would say that situations 1, 2, 3 and 4 as they're described here apply just as well to the other situations, although for reasons that Ken has innumerable times told us, the specific recommendations might be very different or circumstances. So, there's a lack of parallelism here that we're going to have to work on when we get to that piece. DR. FADEN: Fair enough. Lois? MS. NORRIS: This is really a question, and again I'm back on Lines 14 and 15. Will the remedies we're considering for past traditional bio-medical experiments have any impact upon the government's responsibility to research subjects to date in government-supported/sponsored? There are a lot of proposals which in theory are great, and they don't work today. DR. FADEN: Well, I think that the category where that's most likely to happen is the situation in 2-1, which was the discussion we started to have last time about if we have any recommendations that speak to providing medical care for people who have had research-related injuries, what are the implications for it. MS. NORRIS: Well, I'm just thinking in terms of setting a precedent. You know, if we -- if in traditional bio- medical experiments of yesterday, we feel an obligation to people who have been research subjects, then it would seem to me that prospectively again it could have a great impact on government responsibility. DR. FADEN: Perhaps the best way -- I think that's terribly important, and perhaps the best way to think about it is we go through each of these four situations, take them one at a time, and are we comfortable with that extension or are we crafting it specifically so that the extension to the present is not necessarily logically entailed by the recommendation. Henry? DR. ROYAL: On Page 2, the fourth item, Line 22, it seems to me that that includes all experiments, that phrase, that we as citizens wish to discover whether they or their loved ones were subjects in radiation experiments, and, so, it -- I'm again wondering about the doability of all that, the frustration level, that we're somehow thinking about a response that we might want to be able to do but may be impossible to do. DR. FADEN: Oh, when we get to 4, why don't we look at it and see, and that would be -- the text on 4. Look at the text on 4 and see, you know, are we promising what can be done? Also, that one should be time bound. It's mean to be time bound, I think. Much of that historical period, prior to 1974 period, is not meant to extend to today, I don't believe. Unless anyone wants to argue with it, it's really speaking to the anxiety or angst out in the land, that perhaps, gee, I've heard about these things, I wonder if I was part of that or somebody in my family was part of that. Are we going to go into each one of them? I think. I think so. Okay. So, situation 1, and then the rationale and the argument for situation 1 starts on Page 3. Ruth? DR. MACKLIN: I think I know the answer to this, but I'm going to ask it anyway. Again, it's about the restrictive nature of the way it restricts it, namely, the record shows that government attempted to keep information secret, and then there's a very specific purpose, in order to prevent citizens from seeking timely redress for suspected violation of their rights. I know that's carefully crafted, and it's quite narrow. So, my question is, what if it were kept secret but not for this precise reason? DR. FADEN: This is all open. That's what it's for, and when you say carefully crafted, some of this stuff was carefully crafted at 1:10 in the morning back and forth on E- mail. DR. MACKLIN: Well, I can't tell from these words when anyone carefully crafted it, but -- DR. FADEN: I mean it was carefully crafted by people with half a brain in some cases. So, let's be -- DR. MACKLIN: Well, -- DR. FADEN: Everything is open. This is draft. We're debating it, and we should take it apart and say is this overly- narrow, assuming, first of all, that the general view is accepted that in such circumstances, what is proposed here is -- DR. MACKLIN: I guess -- let me just add to that by one thing. I think it's overly-narrow, and I think it's overly- narrow for two different reasons. First of all, there may be or may have been other reasons which we would deem unjustifiable reasons for secrecy, which are not covered by this. The second is the preceding phrase says where the historical record demonstrates that, and suppose the historical record doesn't demonstrate it, and yet we could infer that there couldn't have really -- it wasn't likely to be any other reason, and because that reason was the case here, and that reason was the case here, that's probably the case here as well by inference or by analogy. So, I mean my reasons for wanting to see this broadened, that's what I'm suggesting. DR. FADEN: Hm-hmm. Duncan? DR. THOMAS: I agree with Ruth that this is too narrow. In practical terms, the implications for the poor citizen who would like some redress are the same, whether or not the purpose was legitimate national security purpose or cover-up. Of course, the implications for government culpability are very different in those circumstances, but the rationale that's recited and the phrases which follow don't really particularly rely as I see it on government culpability argument, merely on equity to the poor victim. So, I would favor broadening it. DR. FADEN: I think that is not quite right. I think this is the one where it is linked to culpability, particularly if you buy -- it need not be, but as it's written right now, on Page 4, Lines -- DR. THOMAS: Well, -- DR. FADEN: -- 12 to 14, that paragraph provides the -- DR. THOMAS: Okay. I take that back, but I still think that for practical reasons, it's only fair that we relax this. DR. FADEN: Ken? MR. FEINBERG: I'm not sure I see that argument. I like this situation 1 because if in fact we are going to recommend this type of compensatory remedy, I understood this to be a clear-cut situation where the government deliberately covered up the facts in order to prevent legal liability, and that goes directly to the issue of culpability, and it is the, in this report, the highest degree of government wrong- doing, and unless we're going to open up and broaden situation 1 to include other less-culpable, relatively speaking, situations, I thought that I'd like situation 1 because it really well defined the most onerous government culpability we have discovered and limit compensation to those few situations, and I think that that's appropriate. Clearly, I agree with Ruth that if you read the annotation on Page 4, Lines 5 and 6, we're talking about a cover- up to protect against legal liability, Lines 15 and 16, wrongs because they involve a cover-up of potential violations of individual rights, and I would even make -- spell it out even clearer in Lines 21 and 22, they weren't able to seek redress during their lifetime because the government's purpose was to prevent a redress of their rights just as it says in the italicized situation number 1. So, if you're going to go with this type of remedy, if you don't want the compensatory remedy, you can broaden situation number 1, but if you're going to provide compensation, I think it should be reserved for this highest degree of government cover- up. DR. MACKLIN: Can I just directly -- Ken, there's other words in here, and I had another term in mind, but on Page 4, Line 14, the abuse of this power to avoid embarrassment or prevent litigation. Now, prevent litigation is what you just addressed. Avoid embarrassment -- MR. FEINBERG: It's wrong. It shouldn't be there. DR. MACKLIN: All right. Well, that's what I'm -- okay. Now that's what I'm asking. Avoid embarrassment is one category, and another which I think we've seen and that has come up is avoid bad publicity. DR. FADEN: I think that's what embarrassment was. DR. MACKLIN: Embarrassment or -- well, bad publicity, and we're a little beyond that. Let's not frighten people. Let's not get bad publicity. Let's not get people into some kind of an uproar. So, we'll keep it secret. Where the aim was not specifically to prevent litigation. Now, why would we not think -- I mean your -- I may agree, I do agree, I guess, that this is the category you mentioned, to prevent litigation, is the most egregious, but even if we say there's a hierarchy, might we not also say that it's wholly unjustifiable from an ethical point of view to keep secrets in order to avoid embarrassing yourself about matters of such moment that would prevent people from seeking that kind of redress? MR. FEINBERG: I think it's an outrage that it was done to avoid embarrassment. I think that I'm not sanctioning that, of course. Whether or not -- DR. MACKLIN: But you don't want those words in this situation 1? DR. FADEN: Well, that's what I think we're asking. MR. FEINBERG: I mean I don't mind -- if everyone wants it to stay in, let it stay in. DR. FADEN: Let me point out here again -- DR. MACKLIN: I just want to hear your argument, Ken. You're so persuasive. I mean -- MR. FEINBERG: No, I'm not -- on something like this, to avoid embarrassment to me, I mean I'm not sure you can compartmentalize these things so clearly. Maybe you can. The government -- if it's covering this up to avoid embarrassment, publicity can lead to exposure, litigation, who knows. I can't compartmentalize it. DR. FADEN: As a practical matter, -- MR. FEINBERG: As a practical matter. DR. FADEN: As a practical matter, in the cases where this evidence -- where there's evidence to this effect, both arguments are put forward. Now, it may happen that there's a case out there that because everything's covered up, we don't know about it yet, where the sole issue was in the documents, embarrassment, and nobody mentions litigation. As a contingent matter of fact, the words that we have are coupled together. I mean they happen to be intermingled because people are just thinking aloud about all the reasons why we don't want to have this stuff abroad, and one is we might get sued, and another is we're going to get bad press or the community is going to get upset with us, and they kind of lose them all. They're sort of, you know, one place or the other. So, it just happens that the documents are available to us, and they tend to be intermingled, but you could have a case out there that we don't know about. It's so covered up, we haven't found it, where only one was mentioned, but, so, the sense is all together, these are -- the thrust is going towards illegitimate contexts for suppressing information that otherwise individuals would have a right to have. That's the more broad construction. I don't know if that's -- Sue. There's an infection going down that side of the table here. Pat, and Henry. Nancy? DR. OLEINICK: I assume that when this comes out in the final report, we will be more explicit as to exactly which experiments we feel fall into this category, however the category's ultimately defined, in its very narrow sense or in a broader sense, because I think we want to avoid the situation that we have heard in public testimony, particularly from the veterans and so forth, that when they went to the VA and asked for compensation, they could not prove their case. So, I think that we need to at the beginning give them the opportunity to prove their case. So, it's going to have to be very explicit. Now, if you keep situation 1 defined the way it is, which is very narrow, it's rather easy to do that, and as soon as we broaden it, it's going to become a little more muddied. So, we'll have to think about that. I'm not quite sure what the answer to it all is, but it will be more muddied as to which experiments we think fit this situation, and that the individuals should be allowed compensation. DR. FADEN: Let me point out here there's another dimension that may have gotten lost. This is an instance in which it's specifically indicated that surviving family members would have -- this is the only instance in which that's acknowledged because -- and, so, a lot of the burden for that falls on the moral significance of the cover-up, and that's -- it makes the cover-up issue really central in the way this is constructed. So, that's another reason for thinking hard about how you want to interpret that and define it. MS. KING: Could I follow up on what you just said? DR. FADEN: Sure. MS. KING: Because it goes to what -- we have never asked -- I don't want to lose my turn because I have a broader construct. DR. FADEN: All right. MS. KING: We have never asked whether there is any other justification to carry some of that weight. Precisely the point you just mentioned. We have relied on the cover-up. I am yet unclear why we are not also willing to explore the possibility of harm to the survivors. DR. FADEN: It hasn't come up. Do you want to raise it? MS. KING: Well, the reason -- I will just -- I will come -- I will bring that up because this is one of the problems that keeps bothering me. We don't see the possible justifications. We tend to state a conclusion and then back out of it rather than trying to think of the reasons why a result might be warranted and then narrow it down to what we can support. I'm not being clear, but this is a good example for me, and I'll expand upon it when I get to my turn. DR. FADEN: All right. MS. KING: You could -- you could -- you do not have to make cover-up carry the weight for a bottom line recommendation that says survivors should be compensated, and if that is right, if there's some people who would agree with me, then there's no way -- there's no reason to make this be worded the way it is worded. DR. FADEN: All right. Why don't we -- I've got Ken back on here. Let's let Sue, Pat, you think a little bit more, and then when you get your turn turn, which is one turn from now, -- how about if you wait till after Ken -- after Pat does her fuller discussion of that, then Ken comes in, then I've still got Sue, Pat, Ken's on Pat's point, then Henry, if Henry doesn't mind. Sue? DR. LEDERER: I guess I have a question about the phrasing of these two situations, and this goes -- just so that I understand situation 1, going back to Page 2, Lines 18 and 19, it outlines a situation where the government deliberately held with -- withheld information from citizens it had wronged, thus depriving these citizens of seeking redress, and then on Page 3, Lines 2 and 3, withheld information in order to prevent citizens from seeking timely redress. Is that a significant difference? I mean or does intentionality have to be part of the -- DR. FADEN: Well, I think that goes back to Ruth's point. I mean is it -- is it as a consequence or is it intentional? DR. LEDERER: Okay. DR. FADEN: And that's a core issue, and we either can decide it's a core issue or we can decide it's not a core issue, but I mean we leave it in one -- we shouldn't have the language different in the two places. We should intentionally decide to go with one or the other. So, that's a good point. Thank you. Thus depriving is different from intentionally depriving, and that's the disagreement. Okay. Pat, you're back on again. MS. KING: First, I should say that I agree with the last point that Ruth raised, that looking at consequences or looking at intentionality is important. The second thing I want to say is this was here when I got here this morning. So, I've only read certain points in this chapter sitting here, but this point goes to situation 1, and it goes to situation 2 as well. My problem with situation 1 was I started to say what if the government had a reason for classifying something as secret that we would accept as a good reason, and then it never went back to examine whether there were reasons that justified secrecy in the first place. Continuing the secrecy which had the effect of depriving people of the opportunity to seek redress. That's her intentionality or consequences. When I got to that, I said to myself, this is too narrow because if I'm focused on redress, which is what this seems to be, then I've got to deal with my second situation as well. When I got to situation 2, I said to myself, in view of the time that has passed and the difficulties in determining at this late date whether or not consent was obtained, and then everything else follows, I said to myself, why are we starting here? Can't we start with a statement that says where this was done, where this was done and the consent was not obtained, then a wrong occurred? You know, you may not like my language. But why can't we start with a statement that says what our conclusion would be if we could document rather than starting with the cases where what we're really saying is we can't document, so we're making certain presumptions? Now, the reason I did that was because in my own mind, because it seems to me the far more important thing to say for both the past and the future is the first statement, because we're already saying that we have not exhaustively surveyed the historical record, so there will be cases where people may be able to do things we could not do, and that ought not be foreclosed, but we ought to be able to say something about the future as well, and that might be relevant to the future. When I did those two things in my head, I said to myself, where in the report are the broad frame of justifications out of which we can poll to reach some of these final recommendations? I'm not being clear. It's after lunch. I can see you looking at me blankly. But what I'm trying to say is I don't think a report has to be written, recommendations have to be written that -- that rest on slender reeds. A recommendation can be made because of the condemnation or some different combinations of many justifications. One of the things that struck me is that we seem to be looking for the justification. I would not expect us to agree on the justification. Some of us may be persuaded to recommend compensation for survivors because the survivors were harmed. Some may be persuaded to recommend justification -- compensation for survivors because they believe the government was morally culpable in the sense of intentional wrong-doing. All we need agree to is the recommendation, that in certain situations, we think that the government should compensate, and the report can say some people think this reason, some people think that reason, some people think both reasons. That is what I found missing here. The structure of this did not help me get to that. So, if you're still with me, Ruth, okay, the -- so, in getting to that, I said to myself, I've missed something. So, there must be some preceding chapters where those kinds of arguments are rehearsed or they will be written, and I'm not saying that they have to -- that they should have been written or that they will be written, but I'm not sure that's true, if that's the case. Is there going to be some place out of which this chapter is drawn -- this narrow -- let me try this one more time. I'm not clear. Just narrow it in order to present citizens may or may not be appropriate in this italicized language, depending upon what went before, because it may be having explored the universe, we come down to only wanting to make a recommendation in certain circumstances, while we have shown a broader set of circumstances has been eliminated. I can't make a judgment. I still have people looking like -- I give up. DR. MACKLIN: Are you -- can I just -- because I mean I think I know what Pat is driving at. When you say where in the report or where in the document, rather than make it sound like these are coming out of the blue, where -- to what are these linked that makes these conclusions rather than, well, we sat around and thought about these, and that's what -- DR. FADEN: That's obviously the chapter that's not here. It's the findings. But it sounds like the findings chapter -- Pat wants in that findings chapter more than findings. DR. MACKLIN: Yeah. It's -- well, it's the findings, plus the justification. Why these findings should result in any kind of remedy or compensation? DR. FADEN: But you are also saying, if I understand you, Pat, you want findings and then a discussion of the range of responses that these findings could evoke, and why some of these the committee has chosen not to pursue or why the committee landed on the ones that it landed on. MS. KING: It's the latter that's the most important, why it landed on what it landed on, because when I was trying to -- Ruth is doing a great job. I had a glass of water at lunch. But Ruth was explaining me a lot clearer than I could explain myself. I was trying to make a judgment about her first statement about too narrow/too broad, what would I look for a framework from which I could make a judgment about the point that Ruth made, and my answer was I didn't have it for myself, and, so, it is that missing link of why we're doing what we're doing. Now, part of it is attemptive in the language that follows each one of these italicized headings, but in the language that follows, and that's why I went to the family survivors example, in the language that follows, what we tend to do is look for one justification, which is somehow linked to the original statement, and it does mean that intentionality may have to carry a lot of weight, and maybe that's not necessary. Maybe it is, maybe it isn't. But it's because of the lack of the other that it seems to me we're stuck with that dilemma. I'll shut up. DR. FADEN: Well, no, I mean this is helpful in terms of thinking about pieces that are missing, and that's as critical as getting a sense of the problems with what's here. It's obviously all connected. Generally, Pat, you have a committee conclusion in which committee members came to that conclusion through different rationales, and that's perfectly fine. The implications, though, are that to the extent to which this situation then extends to other situations or has implications for a larger role also becomes more muddied. I mean -- yeah, that's okay. So, Ken, did you want to respond on Pat's point? Henry? MR. FEINBERG: Well, first of all, I want to just congratulate Pat for her consistency. If anybody, if anybody has consistently stated that, throughout the last few months, that any and all conclusions reached by the committee have to be backed up by factual evidence and anecdotal or otherwise empirical information, it's Pat. So, I'm not surprised that Pat says what she says today on this. Let me -- let me just say how a lawyer reached the conclusion for what it's worth in response to Pat, that presumptively in my mind, these situation classifications, 1 and 2, make a lot of sense. Situation 1 to me provides a compensation remedy. Now, the own -- now, the criteria for getting compensation, it seems to me, are the following: (1) most importantly, Phil's point, the historical record must be demonstrable. That is the critical difference between this situation and situation number 2. The record is clear and obvious to the reader. Secondly, in order to get compensation, not only does the record have to be unambiguous when it comes to culpability, but the culpability must be intentional, purposeful, that the purpose of the cover-up was to prevent individual civil liberty - - citizens from gaining access to the courts for redress of their grievances. That's second. Since the historical record has to be clear, and the motivation of the government as to the purpose of the cover-up must be clear, I concluded that if you're going to give a person compensation, that highest of remedies should be limited to the individual harmed. There's nothing magical about this. Pat's right. You could say offspring or family members should get compensation as well, but I saw situation 1, as Ruth pointed out, restrictive but appropriately restrictive. When you go to situation number 2, the most blatant difference is we throw in the towel on the historical facts, that the facts are so ambiguous, so unclear, the whole story is not at all clear, that we will provide the target of the experiment with a major presumption, that it was wrong. Even though the record's unclear, it's wrong. We'll give the victim the benefit of the doubt as to the government's culpability, unlike the clear historical record in situation number 1. But there's a price that we require in situation number 2. Since we're going to presume that the government was wrong, there are two caveats to that, it seems to me. First, you better be able to demonstrate in situation number 2 that you were -- that your sickness was caused by the exposure. You have to demonstrate a cause and effect relationship. If you can do that, then, as I read situation number 2, it's limited just to the target. Situation number 1 will -- I'm sorry. I misspoke. Situation number 1 will extend it to family members because that's the highest degree of government wrong-doing. I mixed it up. In situation number 2, no family members because heavy presumptions ease the ability of the victim to get recovery, and above all in situation number 2, since we're going to have a presumption like this, no compensation or at least other policymakers will decide if the exposure is sufficient and the presumptions been met that maybe compensation, but that's not for us to decide or recommend. DR. FADEN: I've got Henry, and -- MS. KING: Can I respond? DR. FADEN: Yeah, sure. MS. KING: Because I will toss the ball back in his lap. He has been equally consistent in what the bottom line is. But he has not yet been forthcoming about why we should have a justification. What is the justification for such a narrowly- framed bottom line? And that is what I think is the guts of what we need to do. A justification or if we adopt the narrowly-framed bottom line, which will in effect end up compensating no one or very few and will look nice on paper, will have no impact. I don't think we should duck that. We have to state why that is the right result for this committee, and that, Ken is correct, I am consistent on point that I think that when we state those justifications, that why we're willing to go along with such a very limited approach, that that's when the proverbial you know what hits the fan, because that will call us to account for what we're willing to do. These conclusions are helping us bypass the tough questions, which is what we can tell each of us ourselves when we vote about what we're willing to live with. I accept, Ken has been quite clear about what he's living with. I'm not sure that I can live with the same thing he's going to live with, because I want to hear why he's going to live with it, and, so, I keep pushing for a broader consideration of all of the possible justifications that we could use, and let us eliminate them or keep them, because that's what people care about. That's what we're going to be called to task for. That's what we're going to have to live with. Sorry, Ruth. DR. FADEN: No. This is great. This is exactly what this committee needs to do now. We need to really take a hard look and think about what we're doing and see what we need to -- what needs to happen next, and we have to get it all out, because there's no point at this juncture in, you know, holding -- what are we waiting for? We had the luxury seven or eight months ago of saying, well, we'll come to this later, we'll come to this later. We don't have that luxury anymore. So, we have to be where it is. Henry, you've been very patient. DR. ROYAL: It's hard for me to evaluate these situations in the abstract, and as I read situation number 1, I sort of see three conditions historical record demonstrates as one condition, and I've heard Ken saying when it's clear, historical record is clear, but I don't really know what those words mean in terms of what's the threshold. When does someone decide that the historical record demonstrates, and I think the same is true about the intention. When do you decide about the intention, and then the third thing is that it's appropriate relief in the form of compensation for former subjects. I have no idea what appropriate relief means. DR. FADEN: I thought that was real straight-forward. DR. ROYAL: Yeah. Well, what I'm saying is maybe at least for me, maybe it will become much clearer when we actually talk about a specific case and talk about these three elements in terms of the specific case, but in the abstract, it's very hard for me to understand exactly what we're saying. DR. FADEN: Situation 1 and 2 or just 1 for the record? DR. ROYAL: I've only gotten to 1. DR. FADEN: Okay. Duncan, and then Ruth. DR. THOMAS: It's all coming back to me now as I remember our last conference call, and I understand the rationale now behind why we did it this way, and it's -- I think I withdraw some of the stupid things I said a little earlier. Well, I now understand the principle, that what situation 1 is really talking about is exemplary damages. We're going to make an example of the government for doing something really wrong. DR. FADEN: That's right. DR. THOMAS: And that's the justification. No where in here do I see anything in this -- the entire two pages. The word "harm" never appears. DR. FADEN: That's right. It does not. DR. THOMAS: And that was a conscious decision on our part. DR. FADEN: That's right. DR. THOMAS: The only thing that I see is on the -- on Line 21, Page 4. It says, "subjects who may have been wronged", and the wrong here is the -- specifically, the cover-up. So, that's the rationale for this one, and I wholeheartedly support that. Now, there are a few words that sneak into this paragraph here where it implies that that damage is limited to the survivors, not to the subjects themselves. DR. FADEN: No. DR. THOMAS: Of course, that's an editorial comment. DR. FADEN: No, that's not intentional. DR. THOMAS: That's unintentional. I just wanted to clarify that point. DR. FADEN: If anybody's still alive, yes, of course. DR. THOMAS: Now, regarding survivors, Pat made a comment that -- which maybe I didn't understand what she was saying. But I don't think there was ever the intention to say that we would deny compensation to survivors who were themselves harmed. There may be no such situations, and I'm not quite sure what you meant -- what you were thinking of when you talked about harm to survivors, but I think if we could demonstrate a situation where we would say the survivor himself was harmed, either biologically as a result of, let's say, a genetic transmission, we'll get to this topic a little bit later, or psychologically even conceivably, that's a real harm to the offspring, and we should provide compensation in that case. I don't -- I didn't understand that you were trying to exclude that possibility, and then there was one other point I wanted to make. Yeah. Earlier, when we were having the discussion as to whether the situation was too narrow because it required secrecy in order to prevent -- for the purposes of cover-up, and I may have started to make this case, well, the effect on the poor survivor is the same. He can't pursue his case. Such an individual automatically falls into such -- into criteria 2. DR. FADEN: If he was harmed. MR. FEINBERG: If only -- that's exactly -- just the point. The only ones for which that would be relevant is if they are harmed, and we're saying that if they're harmed, then we don't care about it, we got these other presumptions, and, so, whether there was secrecy or not is irrelevant. DR. FADEN: Right. That's the -- DR. THOMAS: So, I'm coming down in support of these two aims more or less as presently worded with minor quibbles. DR. FADEN: That's the thrust of the reason. Ruth? DR. MACKLIN: Situation 2, I really want to go back to reiterate Sue's point about the matching between the numbering that appears on Page 2, where these situations are first set out, and the way they're articulated at greater length, and as a matter of style, I think it's hard to tell what situation 2 is saying. I mean Ken said it very clearly but said -- used one of these words, and not in the same order. When you look at what number 2 is on Page 2, that is, 2 at the bottom on Line 19, it's very clear. So, very clear. Where citizens suffered harm to their health as a consequence of their participation in human radiation experiments. Now, what number -- what situation 2 is in italics is an elaborate gloss with a lot of caveats. I think the caveats have to be put separately in view of the time and in view of this and in view of that, and that can just be thrown out of there and put elsewhere because that's a kid of weaseling out and saying why we're doing it this way, etc., etc. So, I think it has to be crisp. Now, I mean so that's just merely a stylistic point, but it's sort of the point Sue was making about the mapping, so when someone reads this, they can see that's too narrow, we're going to look at situation 2, it should say the same thing, and then some other kind of prose to set out the caveats. Now, here's my difficulty with number 2. It's the phrase on Line 7 and 8 of Page 5 that says, "or credible presumptions of causation should be established by appropriate policymakers". DR. FADEN: The "or" should go away. That's a typo. DR. MACKLIN: Pardon? DR. FADEN: "Or" is a mistake, just for what it's worth. DR. MACKLIN: Yeah. Oh, yeah. Okay, okay. DR. FADEN: I'm sorry. DR. MACKLIN: For purposes, yes, for purposes, etc., credible presumption should be established. MR. FEINBERG: Henry should establish the presumption. DR. MACKLIN: Henry and Eli are scientific experts, appropriate policymakers are different people, and one of the problems that I have here is precisely what we heard in very many testimonies. What were -- what was arrived at by policymakers, and the proof that had to be demonstrated by the citizens and the people who came forward was not available to them, not accessible to them, and the question of who constitutes an appropriate policymaker, what is the relationship between the expert scientific expertise that is required or that ought to feed into that and how can one bind the policymakers who may want to make things tougher for people to get this redress in terms of proof and causality, then the scientists might -- I mean you can take a more lenient view or you can take a stricter view of what constitutes causation. I mean that's not a simple thing to demonstrate as we well know. So, I would like to either get some clarification from what you who talked on these conference calls meant or how this might be rendered more precise to ensure that it doesn't get into the same problems that we already know have occurred when people tried to get redress. DR. FADEN: If you want further confusion, if you look on Page 7, Lines 1 to 6, it even makes a suggestion -- this draft makes the suggestion about how this might be done, that really doesn't square with the language of the decision being made by appropriate policymakers. It's more like appropriate policymakers should identify appropriate -- should identify their procedures -- DR. MACKLIN: Procedural. DR. FADEN: Procedural. DR. MACKLIN: The CVC. I don't know if that would be appropriate. DR. FADEN: Duncan, you may realize some of your language coming back to you from a totally different context. Anyway, I've got Pat, and Henry. Pat? MS. KING: After this comment, I think I'll be silent and wait for the rest of the report, but if this situation 1, -- DR. FADEN: Situation 1 we're on? MS. KING: Situation 1 -- DR. FADEN: Okay. MS. KING: -- is the most egregious thing we can think of where so much weight turns on cover-up and wrong-doing based on all the records that we have examined, I think we could spend a year coming out and gave birth to a squeak, and I mean this quite sincerely because this -- from the bottom of my heart. This is something that comes -- that's why I'm going to wait for the rest of the report. If this is something that comes at the very end of a long discussion, that's one thing. If this is something that stands by itself, that's another, and it's not quite clear to me yet exactly how this is going to play out. I think that the most egregious thing the government did was not cover-up, was to institute some of these things in the first place, and to design some of these experiments, to think that you could go out and do some of the things that they did with people, is what I find egregious. It was made more egregious by the fact that in some areas, there were efforts to cover it up. That's my first point. My second point is if this is going to be the big deal, the big culpability, the big intentionality or the big thing that we think that was wrong with everything that went on, I still would point out that nobody is going to get any money out of this. By the time you try to show intentionality, the historical record demonstrates all those ands, ifs and buts that Ken cited, that all melts to zero, and I think that I don't have any problem doing that, but I think you can really -- there's got to be something that has to go around this recommendation that is not here yet because this recommendation to me doesn't carry a big wallop, except to say that Watergate and that ilk are egregious things. I have no quarrel with that. But that is not the only thing that I would say about what President Nixon did, and I think that that is what we need to keep in mind; that it is not just the cover-up, it's what got started what covers up, and that is what's wrong here. So, I'm hoping I'm clearer now than I was earlier, that -- DR. FADEN: I think it's an important point, Pat. MS. KING: That -- that I may be willing to vote for this and feel comfortable with this, but it certainly needs -- DR. FADEN: Not yet. MS. KING: Not yet. DR. FADEN: Right. I'm sorry. I need to laugh only because the tension has arisen. MS. KING: Oh, that's fine. DR. FADEN: Has risen. The language that you used is going to be with me probably forever. It's going to be one of those where I labored for a year and gave birth to a squeak is something that I think we all want very much to avoid. Now, we have -- that's a horrible thought to be left with. It doesn't mean that that recommendation has to carry the burden of being something worth laboring for, but, nevertheless, we certainly always strive to avoid that. Ruth. I may have lost this because I've not been good at crossing things off. I don't -- I can't tell now whether it's Ruth or Henry who's next. Henry, you've already spoken. Okay. Henry. DR. ROYAL: I guess I want to respond to, I think it was Ken's remark about probability of causation and that that's something that's somehow easier to do than making an ethical judgment about whether or not moral wrongs were done. I think it's very interesting that the committee is recommending that it's okay to say in terms of the ethical aspects of the experiment, if we can't figure it out, the burden of proof will be assumed, but when it comes to the scientific aspect or the risk aspect, which runs into exactly the same kind of problems that you're running into in terms of getting the data that you need to get in order to agree on what the probability of causation is, that there's no similar outlet where we can say, well, there's no need for burden of proof in -- sorry. We're demanding a burden of proof with the risk analysis, but we're not demanding the burden of proof with the moral analysis, and I guess I don't understand that disconnect. I don't understand what we're proposing in terms of -- I think you're putting too much faith in risk analysis, as if several well-meaning people are going to come up with the same number. I mean there's 95 percent confidence intervals that could go from zero risk to one in a thousand risk or one in 500 risk. You're making it sound like probability of causation is much more of a science than it really is, particularly when the data is not there. I mean there's certain data you need to know, like how much was the patient injected with or the subject injected with, and there are cases when that isn't there. DR. FADEN: That is a very good point. I want to separate the -- I think I just want to separate for a minute two things that are embedded in what you're saying, and I think this is very important. One is the absence of the evidence, and the other is the difficulty in making a judgment. There's a presumption here that -- I don't think behind the way this is characterized now that there was a view that it's somehow easier to make a judgment about causal relationships than it is to make a judgment about whether moral wrongs have occurred. Those are difficult judgments and require all kinds of -- we needn't go into it. I wouldn't want to say one is more difficult or less difficult to make. What does lie behind this, and perhaps falsely viewed, is that there's less evidence about -- that bears on the moral judgment question in many cases than there is evidence that bears on the questions about risk. Now, that may not be correct. That's, I think, why it was structured that way. So, that's very important to get straight. What we have -- and that was based in part on what's available in the data base that the committee has, where there's the zero information in many cases about consent procedures, whether there was any or not or just nothing, but there is a little information, say in a journal article, that reports something about what was administered, but maybe that's a wrong assumption. Maybe the evidentiary base is awful in most cases around -- across the board. That's what lies behind this, Duncan. Not the view that the judgments are easier to make in one case or the other, but that by and large, there's more evidence to bear in the historical record, questions of risk, than there is evidence that can be brought to bear on questions of consent or why these subjects were selected. Do you think that's false, Duncan? DR. ROYAL: If I could? DR. FADEN: Sure. DR. ROYAL: One of the things that we've talked about when we reviewed protocols is acknowledgement of uncertainty, and just from a statistical point of view, when you look at the data that you actually have about what the risks are, we're talking about -- and I'm saying having exact knowledge about what -- in terms of an experiment, having exact knowledge about what the patient was exposed to, even having that exact knowledge, any risk estimate is going to be at 95-percent confidence intervals, might be three-four-five times from the lowest number to the highest numbers. Many times, they might include the number zero. So, it's not like we have -- we -- I guess the way I think of it is we know the order of magnitude of the risk, but we don't know the exact risk, and a lot of the remedies that come later on or the statements that come later on require a much finer definition of the risk than is possible scientifically. DR. FADEN: This is a big muddle. I mean we've got to determine whether this approach even makes sense. Duncan, did you want to -- DR. THOMAS: Yeah. I share your feeling of irony about the -- we and the ethics committee making stronger presumptions about -- being willing to make stronger presumptions about the ethics and about the science. But I don't think anybody here is saying that risk analysis is a science, an exact science, nor that it's easy. We all recognize these uncertainties which you so well described. Operationally, however, I'm -- I don't see you recommending across-the-board compensation for all sick people nor do I see you across-the-board saying nobody was ever harmed as a result of these experiments. So, there are fine distinctions that will have to be made, and, frankly, I don't know any other way to do it, other than by inexact science of risk analysis. But we -- DR. ROYAL: I avoided the fine distinction when it came to the moral side of the problem. DR. FADEN: It's not avoidable. There's just nothing to say. I mean if you have zero information, zip, zero, on the question of whether consent was obtained, you can't automatic judgment have nothing there. You don't have anything to look at. It's not like you have an estimate, and you're debating about whether so and so's analysis or so and so's analysis is more correct. Ruth says it was a moral wrong, and I say it wasn't. There's no -- nothing in the record for thousands of experiments. We don't know anything. Now, maybe somebody knows something, but it's very unlikely that given the difficulties we had getting evidence to bear on whether consent procedures were followed or obtained, it's very difficult to imagine that someone else is going to, you know. As the man testified before us yesterday said, with an executive order and a budget and a staff, so on, we still couldn't find stuff that would speak to consent procedures for lots of these experiments. Just weren't there. There was no there there. So, that's a -- but, Henry, if it's true that there's no there there on the risk exposure, that would be a big problem. DR. ROYAL: Let me -- let me say it in a different way. Maybe it will express my concerns better. Basically, what I hear being done is the committee is acknowledging that it's difficult on moral grounds to make any decision about whether or not people should be compensated, and what they're doing is they're putting scientists in the pivotal position of having to make these very difficult judgments. You have all of the issue of burden of proof, you know. Who's the burden of proof going to be on? With the moral judgments, you've said it shouldn't be on the scientists. With the radiation risk, in the absence of evidence, what happens, and why is it okay that the burden of proof -- that -- I mean what I'm hearing you say is that you want the burden of proof to be that they -- to be the probability of causation. They have to prove that it's reasonable that their illness was related to radiation, and I guess I don't understand why it's demanded for the radiation aspect of the problem but not the moral aspect. DR. FADEN: Because there wouldn't be any way anybody could ever prove the first one. I mean in some cases, it could, but in some cases, you simply couldn't. It's like you couldn't. There's no evidence there. There's nothing there. There's nothing. That may be an incorrect characterization, but it's based on the assumption that, you know, after the years of work, there were so many experiments about which we know nothing with respect to consent, that to put a burden on and say you have to prove that your consent was not obtained would be an impossible thing because -- MS. KING: But Henry's point is, is the record any clearer -- DR. FADEN: That's what I'm asking. MS. KING: -- with respect to -- DR. FADEN: That's what I'm asking. MS. KING: -- not about how you make judgments but information -- DR. FADEN: That's what I'm asking. I agree. If there's as much lack of evidence on that point as on the first point, then none of this approach makes sense. That's what I tried to say in the first place. This presumes that in fact there is more evidence that bears on exposure levels than bears on whether consent was obtained or not or how adequately consent was obtained. If that's not correct, then this whole thing doesn't make any sense. I've got Duncan, -- Ruth, Duncan, Ken, in that order. Ruth? DR. MACKLIN: I want to at this point make a radical proposal that changes this substantially, but for the reasons we're talking about. That is, what this says is the presumption of causation, and that's where we're stuck. The difficulty of being able to make that presumption, find it, the absence of it, etc. What if that were substantially weakened? And I realize what I'm suggesting, but substantially weakened to say there is a possible causal connection. Now, a possible causal connection doesn't require one to demonstrate causation. It just requires one to say scientifically -- I mean we're talking about people who have illnesses, and we're talking about people who we know -- pardon? DR. FADEN: Yeah. DR. MACKLIN: They got an illness. They were in the experiment. Those are two facts we know. Now the difficulty is demonstrating causation. DR. FADEN: Correct. DR. MACKLIN: Which is a very difficult thing to do. Now, it may be easier, and tell me, scientists, easier to say causation is not possible because there haven't been instances, there's no scientific evidence that A causes B or that this kind of illness was ever created by that. It might be easier, I'm asking, is it easier to do that than to set up the presumption of causation? Now, the weaker category here, that is, there's a possible causal connection, but we don't know precisely because we don't have the evidence of dosage or we don't know some other things, sets up a greater presumption of compensation for people who are in that category, but it doesn't -- I mean that's the difference. It shifts the burden of proof from -- which is going to roll a lot of people out and have them never get compensated because you can't settle these problems about causation. So, it means more people are compensated because they were in the experiments, and they got sick, and if you can't argue that there could be no possible connection, then they're in the category. DR. FADEN: Duncan, and Ken. DR. THOMAS: I don't frankly think that's any easier than establishing a presumption of causation. I think we would all of us agree that any presumptions need to be liberal ones because of all of the uncertainties. I don't think anybody is seriously suggesting that each individual claimant should go to the multi-dimensional table, radio- epidemiologic tables, and pick out the particular cell, by dose, by age, by latency, by so on, and look in his unique circumstances and come up with a number, and if that probability of causation is greater than 50 percent, he gets it, and if it's less than 50 percent, he gets zip, or even, for that matter, goes into a complicated linear formula, which ascribes -- and gives the dollar amount that's expected. Instead, when Congress considered this before in coming up with the Radiation Exposure Compensation Act, they said, well, we're going to use the radio-epidemiologic tables rather as a rough guide-line in deciding what reasonable presumptions might be, and as a result of looking at these tables, we conclude that thus and thus and thus are causally related and thus and thus are not causally related with a few fine distinctions here and there, and we can quibble about whether they got the distinctions right or whether they got the right causes for sets of lung cancer. That seems to me to be the only viable strategy that will work. I'm hearing from Henry a lot of objections to this process. I mean I'm hearing how difficult it is, and I agree completely, it's very difficult, but I haven't heard from you yet any alternative suggestion. How would you go about establishing these presumptions if not by some sort of a method like what I've just described? DR. FADEN: Okay. Ken is on next, and then Henry, and let me just point out, we have a problem in that -- I mean it's not a problem. It's sort of a good thing. But it's a strain on the discussion. We have someone scheduled to speak to us at 3:15 from the National Academy of Sciences, reporting on their on-going work with respect to experiments that were conducted in Alaska. We, obviously as a courtesy to that person, must hear him at 3:15. So, I think we should -- we will return to the discussion when he leaves, but I think that maybe we should have Ken, and then Henry, if you want to respond to Duncan, fine; if not, you can wait until after the break. Ken, Henry, take a short break, so that we can come here at 3:15. We haven't heard that he's going to be late or anything. So, we'll assume that Dr. Pierce will show up on time at 3:15. So, Ken, Henry, and then we take a break, and we will begin at 3:15, even if our break is only four minutes, because as a courtesy to Dr. Pierce. MR. FEINBERG: There is an alternative. There is an alternative. The reason I originally and continue as I think you do, Duncan, and perfectly willing to go along with situation 2, is because I assumed and continue to assume that, and it's too bad Phil isn't here today, because I see Oscar in the audience, and he'll appreciate this, I assumed under situation number 2 that if a credible independent group of scientists got together, they would be able, they would be able to develop presumptions of causation. The Congress does it all the time. Oscar's not happy with the way Congress does it, and he's not happy with the way the VA does it, but notice, as Ruth pointed out, the draft envisions a Henry Royal-type panel able, able to credibly develop those presumptions. If Henry tells us -- DR. ROYAL: I resign. MR. FEINBERG: If Henry tells me that those presumptions are ephemeral, that we place too much reliance on scientists and doctors in this field, it can really be done fairly without promoting tremendous divisiveness among would-be subjects, then there is an alternative, and the alternative is have presumptions for everybody. Presumptions of government culpability. Presumptions that there's a causal connection. But no compensation. You can't open the flood gates and give everybody compensation, regardless of evidence of government culpability, and regardless of evidence of causation. So, I guess the alternative would be that if Henry says to me, you know, you really can't go down that slippery slope developing medical presumptions, then my situation number 2 gets folded up, everybody gets an apology, which is one of the three recommendations at the outset of the chapter, and the only people left to get more than an apology are the government cover-up victims. That's an alternative. DR. KATZ: Henry, the future depends on you now. DR. FADEN: Henry, you want to comment on that before we take a break? That -- I think that's the force of where you were going, Duncan, in challenging Henry. I mean what's the alternative? Let me point out because people in the audience may -- the situation 2 discusses the options of medical care for the illness, government reimbursement for the medical care where the illness that the person experienced or compensation, whatever the Administration or Congress would wish to recommend, is basically the way this is crafted right now. It's open as to how that would be formed, but it's basically saying something indeed would be done for these folks, and that's -- and then your issue is you can't do something for everybody, so if you can't figure out the subset for whom something should be done, you've got a big problem. MR. FEINBERG: Just for one -- literally 30 seconds. The analogy is in the law between the tort system, when someone gets hit by a car or a truck, and workers compensation system. The employee can't sue the employer. The law doesn't permit it. The employee's presumed to be -- there's a causal connection work-related. The employee's contributory negligence is irrelevant, and the employee gets paid, but a very limited amount, as opposed to the individual who's allowed to sue in the tort system, has to prove no contributory negligence, has to prove all these presumptions, and then can get a pot of gold if the jury so concludes. That's the analogy here, it seems to me. DR. FADEN: Can we do this, Henry? I -- let's let Henry think because I believe Dr. Pierce may have just come in. If we could take a two-minute break, no more, okay, as a courtesy to our speaker. Two minutes, come right back. No phone calls. (Whereupon, a recess was taken.) DR. FADEN: Well done. Well done. We are down by only a few. Okay. We are pleased to have with us today Dr. Chester Pierce and Mr. Loren Setlow. Thank you, Dr. Pierce. Appreciate it. Thank you both for coming. Let me just introduce you both for a few minutes, just so people know the context. Thank you both for coming. We appreciate it very much. It's going to help us immeasurably to have an understanding of what the National Academy's doing. Just by way of background for our committee members and people in the audience, Dr. Pierce, Dr. Chester Pierce is Chairman of the National Research Council/Institute of Medicine, and I will read this because like all titles, it doesn't flow, Committee on Evaluation of 1950s Air Force Human Health Testing in Alaska Using Radioisotope Iodine-131. Dr. Pierce is a professor of psychiatry at the Medical School, at the School of Public Health, at Harvard University, and is at Mass. General, and we've asked Dr. Pierce to discuss the Alaska study with us. He's agreed to explain to us the scope of his committee's work as well as what transpired during your trip to Alaska in July of 1994, is that right, when you all went up there, and apparently your recommendations, your conclusions or your report will come out in late Spring. So, about the same time this -- as ours. We're kind of trying to get together. With Dr. Pierce is Mr. Loren Setlow, who is the Director of the Polar Research Board in the National Research Council, and Study Director for the Alaska Study, and we very much appreciate both of you joining us today. So, thank you. Presentation: The National Research Council/Institute of Medicine Committee for Evaluation of 1950s Air Force Human Health Testing in Alaska using Radioisotope Iodine-131 DR. PIERCE: Thank you. Madam Chair and members of the committee, I am Chester M. Pierce, Professor of Psychiatry at Harvard Medical School, Boston, Massachusetts, and Chairman of the Committee for Evaluation of the 1950s Air Force Human Medical Experiments in Alaska using Radioactive Iodine. Accompanying me today is Loren Setlow, Director of the National Research Council's Polar Research Board. The National Research Council/Institute of Medicine are pleased to present testimony to you today regarding the scope of the effort of the committee's charge and certain information obtained during its public meeting held last July in Fairbanks, Alaska. Our effort to review certain 1950s Air Force medical experiments was conducted at the request of Congress as mandated in the 1994 Department of Defense Authorization and Appropriation Acts. At the present time, the report of my committee's work has been prepared in draft, but because it is undergoing review and revision, the report's analyses, conclusions and recommendations cannot be presented today. Before I begin, I would like to thank your committee staff for the assistance they provided in keeping us informed of the status of your work in supplying -- and in supplying certain documents important to our review. In May of 1993, at the Arctic Contamination Conference, sponsored by the 14 agencies of the Inter-Agency Arctic Research Policy Committee, Senator Frank Murkowski announced that he was requesting the Institute of Medicine at the National Academy of Sciences to conduct a review of certain Air Force medical experiments which took place in Alaska in the mid-1950s. The experiments by personnel of the Arctic Aeromedical Laboratory, that is AAL, used Iodine-131 as a tracer to determine the role of the thyroid gland in a climatization to cold. 121 human subjects were involved. This included 102 Alaskan Natives from six villages, plus 19 white military men. Based on the initial request, and the efforts of Senators Murkowski and Stevens, legislation was passed in late 1993 mandating our review. In May 1994, in agreement with the United States Air Force, Human Systems Command, at Brooks Air Force Base, San Antonio, Texas, the Polar Research Board, in collaboration with the Board of Radiation Effects, Radiation Effects Research, both National Research Council, and the Board on Health Promotion and Disease Prevention of the Institute of Medicine, established the Committee for Evaluation of 1950s Air Force Human Health Testing in Alaska using Radioactive Iodine- 131. The committee members, besides myself, include Dr. David Baines, an Alaskan Native physician, who was actively involved in medical practice in indigenous populations in St. Marie's, Idaho; Dr. Inda Chopra, an expert in thyroid endocrinology and professor of medicine at the UCLA School of Medicine; Nancy M.P. King, J.D., who is currently an associate professor at the University of North Carolina, School of Medicine, and an expert in bio-ethics and informed consent; and Dr. Kenneth Mossman, who is currently professor of microbiology at Arizona State University. He's a past president of the Health Physics Society and an expert in the subject of radiation biology. The committee was to investigate four questions. One. Whether the series of medical studies were conducted in accordance with generally accepted guidelines for the use of human participants in medical experimentation. Two. Whether the Iodine-131 dosages used in the studies were administered in accordance with radiation exposure standards generally accepted as of 1957, and with the radiation exposure standards accepted as of 1993. Three. Whether the guidelines used in the studies included guidelines regarding notification of participants about possible risk. Four. Whether subsequent studies of the participants should have been provided for and conducted to determine whether any participants suffered long-term ill effects of the administration of Iodine-131 and, in the case of ill effects, needed medical care for such effects. The Harris Senate Conference Committee, meeting on the Defense Department's appropriation for 1994, requested that we provide recommendations to the DOD on the next steps to take. Our report will be publicly released, and the DOD is required to make a report to Congress on the study. The committee first met by teleconference on June -- in June 1994, and proceeded thereafter to carry out its charter. As the experiments to be reviewed happened nearly 40 years ago, reconstructing the events of the research and locating the researchers and subjects was a formidable task. The effort consisted of a detailed historical record search at Air Force and Department of Defense repositories and National Archives, regional and national centers, requests for assistance from local tribal, state and federal agencies, telephone and personal interviews, written interviews utilizing a questionnaire, and a public meeting. As the committee's charge was to assess the conduct and guidelines of the experiments, the committee did not perform physical medical examinations of the study participants nor did it review their medical histories. While the committee did attempt to contact all study subjects, address changes, the death of some participants, and lack of pertinent information in the original AAL report or in Air Force records prevented this from happening. The National Academy of Sciences Institution Review Board was kept informed about the methods of our committee from the inception of the project. In early July 1994, a physician on the committee and the NRC study director traveled to two villages in rural Alaska to interview Inupiat subjects from the 1950s medical study. A public meeting of the full committee in Fairbanks followed on July 7 and 8, 1994. At the meeting, the general public had an opportunity to provide information as well as Athabascan Indian study participants from interior Alaskan villages, a military participant of the AAL study, doctors and researchers who worked at the Air Force laboratory in the 1950s, representatives and physicians from state, local and tribal government health agencies, a medical historian, and also the doctor who led the medical study, whom we talked to by telephone from Norway. Recognizing you have heard testimony twice by representatives of the Inupiat villages of the North Slope, the information which follows reflects the results of our public hearing in Fairbanks, but does not include our analysis of it. According to publicly-available histories of the unit and a previous Polar Research Board report, the AAL's mission was to conduct research on the development into human factors, problems, incident to Air Force activities in Arctic and Sub- Arctic regions for the purpose of increasing operational capability of the Air Force in those regions. Based on public statements made at our meeting, from previous employees of the AAL, a program of studies was developed in the 1950s, both by non-military and Air Force doctors and scientists at the AAL, in order to understand human climatization and adaptation to Arctic cold. The study subjects ranged from animals to military personnel to Native subjects. Dr. Carey Rodahl, who led the medical study, told us by telephone during our public meeting that he was recruited from Norway by the Air Force to be the director of the AAL's Department of Physiology, and later became the civilian laboratory director. He started his own investigations into how Inupiat and Athabascan Indian populations lived and survived. He testified to this on the basis that his laboratory wanted to learn if there was such a thing as human climatization to cold. He said he expects the Natives exposed to Arctic cold for generations to be climatized. His study method, according to AAL Technical Report 57- 21, Human Climatization to Cold, which your committee has obtained from the Air Force, would be to compare white controls with representatives from the Native settlements, conducting studies both in the field and his laboratory. He told us that from 1950 to 1957, except for 1952 to 1954, when he returned to Norway, he conducted, directed and oversaw several of these studies. The studies, he said, examined the nutrition, physiology and living habits of Alaska Natives from a variety of villages. He also said that based on conclusions from previous studies by the AAL, that found elevated basal metabolism in Alaska Natives, he proposed to determine the role of the thyroid in man during cold exposure. The method to be used was to administer capsules of the radioisotope Iodine-131 to Inupiats, Athabascan Indians and Air Force and Army personnel. According to the report, the radiation uptake in subjects' thyroid, blood, urine and saliva was measured by scintillation, that is radioactivity counters, in the field and laboratory. Blood cholesterol, dietary iodine uptake, basal metabolism and environmental exposure records and test information would also be obtained. To evaluate the effect of different levels of cold exposure, the testing proposed was to take place at different seasons of the year as well as before and after exposure to cold, which was done additionally on the Air Force and Army subjects. In his conversation with the committee, he also was quite clear in stating that two questions he wanted to answer were (1) if the cold weather somehow stimulated Natives' thyroid glands, and (2) if Natives' thyroid activity was high because of endemic goiter. In the telephone interview at our public meeting, Dr. Rodahl told our committee that he received the permission of his commanding officer at the AAL to conduct the study, and the headquarters in Washington was also aware of what he was planning to do. He took a one-week course in Chicago on how to handle, administer and measure Iodine-131 in humans. After obtaining the appropriate laboratory equipment for the project, other physicians were instructed in experimental field and laboratory procedures. He told us that in order to obtain volunteers for his research, he approached the commanding officer, in the case of the military participants, or the village elders, in the case of the Native Alaskans, and explained what was to be done, and then asked them to bring the volunteers to him. He said he explained what the purpose of his work was and told them that they had a right to refuse to participate, using the village elder as an interpreter with the Native subjects. I will go into this in more detail shortly. Based on the AAL Technical Report 57-36, Thyroid Activity in Men Exposed to Cold, which your committee also has obtained from the Air Force, and testimony of Dr. Rodahl at our meeting, the radio-isotope dose was kept as close to 50 microcuries as possible. However, he told us that due to the long distance from Oak Ridge, Tennessee, where the capsules were formulated, to Alaska, and transportation difficulties in reaching remote villages, the dosages decayed. As a result, he said, the physician researchers sometimes had to use much smaller doses. According to information provided at our public meeting, the first test in Alaska took place during the Summer of 1955 and were continued until February of 1957. Names of all but six Point Hope Natives and six infantrymen were provided in the report. While we heard statements from Indian subjects, received only a single dose of radioisotope tracer, several Native subjects who participated in the potassium iodide control experiment received as many as three doses of the tracer. We spoke to two of those subjects at our meeting about their experience. Your request for our testimony asked that we speak to the matter of risk and benefits of the experiment. As the report is still in review, I cannot comment on our assessment of the risk to the study participants. I can relate that at our public meeting, Dr. Rodahl told us he did not consider the tracer dose of one -- of Iodine- 131 to be harmful, and he did not consider his study to be a radiation study. He said the dosage used was standard at the time, that it was what he had been taught in Chicago at his training course. The dosage had been approved by his commanding officer and the Atomic Energy Commission, and the capsules were formulated at Oak Ridge. While we did not ask for such information, due to our charge, Native Alaskan experimental subjects or members of their families, who spoke before us in Fairbanks, complained of a wide variety of ailments, such as skin rashes, though none claimed to have had thyroid cancer. A physician of one woman subject told us the subject, a participant in the potassium iodide control experiment, was being treated for a hyperthyroid condition. Other speakers and individuals who provided written statements were quite concerned about cancer rates in their Native communities. They wanted to know if the Iodine-131 study could have caused cancers in Inupiat and Indian study subjects, now deceased or ill. While unrelated to the AAL study, speakers raised concerns about cancer, perhaps caused by former Soviet Union radioactive waste material disposal in the Arctic Ocean, and a 1960s test on disbursement of radioactive material at Point Hope, Alaska, in an AEC and U.S. Geological Survey experiment known as Project Chariot. Speakers at our meeting said that at least one woman subject may have been pregnant at the time of the study. Another was blind, and a third had been treated for uterine cancer in 1950. While the technical reports of the study also mentioned that two women subjects were lactating at the time, Dr. Rodahl could not recall the information. Two of the speakers at our meeting who were subjects were minors at the time of the experiments. When asked about subject selection, Dr. Rodahl said he took his volunteers for his research, all the Native subjects were brought to him by village elders. Dr. Rodahl stated in his conversation with us that his research found that salt supplies in the interior villages were not iodized. A benefit of his work was that it called attention to this problem, and the salt supply in the local stores was replaced with iodized salt. He mentioned also that he was in direct contact with the physicians of the Alaska Native Service, who were aware of a goiter problem in these communities, as thyroidectomies had been carried out on some interior Alaskan village members. He told us that in designing his Iodine supplement experiment, he was trying to find out if the cold weather was affecting the thyroid activity or if there was some other cause for elevated thyroid activity. In this regard, he tested on purpose some subjects with a large -- who had enlarged thyroids. With respect to follow-up, he said that this was the responsibility of the ANS, which was aware of his research. In the course of our Fairbanks interview with three Alaskan Natives from Arctic Village and Fort Yukon, and the family of a fourth from Arctic Village, none could remember being visited by a physician from the AAL or ANS for years after the study. Regarding the scientific conclusions of his research, Dr. Rodahl said he ultimately found no difference in the thyroid activity of white military men and Alaska Natives. He attributed the difference in ability to withstand extreme cold to the Natives' diet and the way they were active or inactive during cold weather. A principle focus of ACHRE, as your letter of invitation states, has been the matter of informed consent and the military practices of the time. Our public meeting did shed some light on this matter, based on interviews with Dr. Rodahl, two former AAL employees, and an AAL researcher, plus interviews with one military subject and the Alaska Natives who spoke to us. Dr. Rodahl told us he went to his commanding officer and requested volunteers through the chain of command. He did not observe how they were recruited by the Air Force and Army in Fairbanks. When a volunteer came to him, he said he explained the purpose of the research and what it would do in -- what he would do in the study, then gave the volunteer a chance to refuse to participate. The AAL physicians we spoke with all said they had not seen or received any Air Force directive on informed consent from the Air Force, and that there was no requirement for a signed form for medical research. The AAL researchers who spoke -- we spoke with said that at that time, in the mid-1950s, doctor visits to Native villages were quite scarce. Dr. Rodahl said when his plane landed, the villagers would come running to meet him and the other physicians who came with him, and the villagers would immediately want their ailments treated. He said the physicians treated them because they were medical men. He also said the Natives trusted them, and they trusted the Natives. However, he also said the AAL physicians were researchers and believed their study would be of benefit to the Natives by helping understand how the thyroid might be stimulated by cold, and what might be the cause of goiter in some of the communities. As a matter of practice, the AAL physicians told us they would get a village elder who spoke English and explain to him the purpose of the study and what would be done in the study. The elder would then go into the village and find volunteers. We asked Dr. Rodahl if the subjects who were brought to him were given the right to refuse to participate, and he replied that they were. To his memory, nobody refused as they were quite willing to go through the procedure. He said the elders served as an interpreter for those who did not speak English. When questioned about how he explained the use of radioactive tracer, Dr. Rodahl said he did not use the term "radiation" in explaining the research procedure to his study subjects. Our interviews with physicians and others at our public meeting indicated that there is no word for radiation in the Native tongues. Only one witness among the Native subjects we interviewed at the meeting remembered being given the opportunity for refusal, but he said he had not been told about the use of a radio-active tracer. That subject stated that at the time, he was a janitor in a hospital in Fort Yukon, that he spoke English, and that he knew what radiation was as a result of reading a book about Madam Curie several years before. He said he had never heard the term "radiation" in connection with the experiment. A former infantryman we spoke with did not recall radioisotope testing as part of the study, but he did recall the affiliated exposure to cold experiments. This was in line with what Dr. Rodahl said about not considering the tracer as a harmful substance and not mentioning the term "radiation" to his subjects. The study participants from Arctic Village and others who have lived there told us at the public meeting that none of the villagers spoke English at the time. Arctic Village, they said, was among the last of the interior villages to have contact with Western culture. The question was posed as to how the experiment could have been explained to those Athabascan Indians when the elder did not speak English. All the Native study subjects said if they had been told they were to take radioactive tracer for research, they would have refused to participate. The subjects from Arctic Village said they did not know they were involved in research, but instead believed they were doing something that was of benefit to their health. Statements given by the AAL researchers at our public meeting indicated there were no written guidelines provided by the Air Force on the matter of how to obtain consents for research. Dr. Rodahl was quite clear in saying his study had been approved by his higher-ups in Fairbanks, and that Washington headquarters also knew what he was doing. He said if there was anything wrong with the study, it would not have been approved, and he would not have been allowed to publish his study results. There was no memory of having a need for a written consent form, and he believed the research to be harmless, given the use of Iodine-131 as a standard medical tool of the time. The AAL researchers we spoke to stated they did obtain individual oral consent. However, in the Native communities, they assumed that individuals who came back with the village elder were volunteers and understood they would be participating in research. Physicians' explanations of the conduct of research were contradicted by the Native speakers we saw at the meeting, though one remembered being given the chance for refusal. The infantryman remembered being given a chance to refuse as well. According to Dr. Rodahl, the radioactive nature of the medical tracer to be used was not explained to the experimental subjects. That completes my written testimony. I will be pleased at this time to answer questions you may have on the scope of our study and the information obtained in our meeting at Fairbanks, though I will not be able to discuss the committee's conclusions, analyses and recommendations. DR. FADEN: Thank you, Dr. Pierce. We need to be mindful that Dr. Pierce can't address the conclusions and recommendations. Ruth? DR. MACKLIN: Yes. I just have a couple of factual questions. I'm sorry if these are a little incoherent because I'm hearing this for the first time. My first question was, Dr. Rodahl was a -- I take it, a Norwegian physician? DR. PIERCE: Yes, ma'am. DR. MACKLIN: And what was his -- and he was a civilian? DR. PIERCE: Yes, ma'am. DR. MACKLIN: So, two questions about him. First, what was his relationship to the American military? That is to say, here's a civilian from another country, here's the American military presence in Alaska. I mean if you could just say a little more about how that worked. Was he a consultant? Was he an employee? DR. PIERCE: He was a civilian employee and recruited to the task, and at the time, as a matter of fact, was relatively -- was a celebrated researcher in the high latitudes. MR. SETLOW: He was a nutritionist, and the Air Force at the time was beginning to set up the laboratory in Alaska, and they needed to find researchers with backgrounds in this area, and found that there were not too many Americans who did that sort of research and had trouble recruiting them to come to Fairbanks, and, so, they went to Norway to recruit Dr. Rodahl, who came over with other -- with another Norwegian researcher later on. DR. MACKLIN: Well, what lies behind my question, and it's really my own thoughts about this, is that this committee has been trying to get a picture of what was known and practiced by way of informed consent among American physicians, either doing research, doing research involving patients, doing research that might have been therapeutic, and using volunteers. It becomes more complicated when we're talking about someone from another country where there, for all we know, might not have even been what were the practices and standards here. So, that's really what lies behind -- lay behind my question, and another quick question, if I may, did I understand you to say that they sent him to Chicago for a week to learn about radioactive Iodine? DR. PIERCE: Yes, ma'am. DR. MACKLIN: Is that long enough? I mean I don't know anything about this stuff. DR. PIERCE: That was -- DR. MACKLIN: Is that long enough to know when you have to learn to be able to do things competently? DR. PIERCE: He was licensed by the AEC at the time, and apparently that was what the standard thing, and, so, we can only -- DR. MACKLIN: So, that would be a standard time, and that would be -- nobody would question whether if you go for only a week, how can you learn what you have to know. MR. SETLOW: We weren't charged with taking a look at Chicago, at his competency in this particular area, but in documents that are public, that were available, the one-week training period was what he had undergone, and that was sufficient for the Air Force and his commanding officers and the AEC. DR. MACKLIN: Okay. One final question, if I may. In your testimony, Dr. Pierce, you said that the dosages decayed when these capsules were sent from Oak Ridge to Alaska, and as a result, the physician-researcher sometimes had to use much smaller doses. Well, I mean on the one hand, one might say smaller might be better, and that there may be less potential for harm, but could they find out what they wanted to find out? Did it affect the research in any way, that they ended up using much smaller doses? Did they know just how much smaller doses? I mean what -- how did these fit into the science, and what they were trying to do? DR. PIERCE: I think we have to defer on that. MR. SETLOW: The only thing was at the public hearing, Dr. Rodahl was questioned on that particular issue, and just said that what they had to do was to measure the radioactive counts for a longer period of time. But they did -- they did carry out those experiments and all of the numbers were recorded on each participant in the study, regardless of whether they received 18 microcuries in a dosage or 50. DR. FADEN: I see Reed, and Nancy, and Henry, and Sue. Okay. Reed? DR. TUCKSON: Just sort of a follow-up to Ruth's question. It's interesting to us, to me, that Dr. Rodahl again was a respected international physician in his field. DR. PIERCE: Might I also say that what I didn't say is that he was also considered, I think, also sort of an anthropologist, which is relevant to our findings. DR. TUCKSON: Oh, thank you very much. Very important. So that while Ruth asked about it in the sense of him being a non-American, it would be -- one of the issues that we've been struggling with have been around issues of the Nuremberg Code, and the universality that -- with which that may or may not have been applied to issues of informed consent, and I wonder, without asking you to touch on conclusion, but more on his testimony, did he -- did those sort of issues get discussed, and he felt like that this was unusual that people would be questioning this issue of informed consent? Was he -- did he find that this concern regarding these issues was unusual or inappropriate, given the standards of the day, that he was used to in the international research community? DR. PIERCE: I'll try to represent him, you know. Of course, I think his view was that, first of all, this was sort of a medical procedure and not a research, and that the dosage and so forth was relatively harmless, given the standard -- the state of the art at the time, and I think that he felt that -- I think that's what his view would have been about the -- what he testified. MR. SETLOW: He was asked very specifically whether he felt that the Nuremberg Code applied to this research, and his immediate response was that he did not feel that his experiments were harmful and that he had the approvals of his commanding officer and the officials in Washington. Of course, he would not be allowed to publish his study if they -- if the experiments were harmful. So, in that, you have an answer. DR. TUCKSON: Just a 10-second, and it probably may not be that important, but do you recall the circumstances around which he was asked about the Nuremberg Code? In other words, was that -- that was -- MR. SETLOW: I asked that directly. DR. TUCKSON: And -- okay. And that's just from your sense of that -- I mean, I guess it's just useful. I mean that comes out of your appreciation or sense that that is some sort of useful instrument by which to evaluate the -- MR. SETLOW: The committee's charge is to evaluate the guidelines and issues of informed consent. So, that was under our charge. DR. FADEN: Nancy? DR. OLEINICK: I just have a couple of technical questions about the experiment per se. Everything in your testimony and seems on the descriptive material talks about Iodine-131. You may not be close enough. And yet the actual protocol that we have here talks of I-125. Do you know what was actually used in this experiment? MR. SETLOW: I don't know what you have in front of you. DR. OLEINICK: Oh, well, I -- we have something that was a report of the -- it's very hard to read, but the Working Party Conference for this study, held at the Naval Arctic Research Laboratory in Point Barrow, Alaska, in 1976. MR. SETLOW: That's a separate study. DR. OLEINICK: That was a study -- MR. SETLOW: That was proposed, yes. DR. OLEINICK: That would explain it. I just assumed that was all one of -- DR. PIERCE: We were narrowly charged to look at just the I-131 experiments. DR. OLEINICK: Okay. Then that explains it. Thank you. DR. FADEN: Thanks, Nancy. Sorry about that. DR. OLEINICK: Okay. DR. FADEN: Henry? DR. ROYAL: From your description, excuse me, it sounded like this study was one of many studies that were conducted by Dr. Rodahl over a period of time, the I-131 uptake study. Was the informed consent for this study or was the consent process for this study any different than the consent process for any of the other studies? DR. PIERCE: I don't like to keep deferring, but I think that our charge we had was just the I-131. That's all we could talk to him about. DR. ROYAL: The second question I had was when we heard testimony about this experiment, there was a description of people sitting naked in a cold room. Was that related to the I-131 uptake study or was that related to other studies? What was that? DR. PIERCE: I think that, you know, at our public meeting, we heard lots of descriptions of all kinds of experiments which weren't I-131, but the participants would tell us a number of different kind of experiments were done, but the I-131 as far as what description we got at the public meeting, there wouldn't have been any occasion for that kind of thing you described. I think that's -- MR. SETLOW: As part of the acclimatization to cold studies, that particular study that you're mentioning was included in the Air Force archives. There are separate studies that look at that specific one, but, again, that was not the focus of our particular effort. DR. ROYAL: So, for this particular I-131 study, there were no -- there was no need to sit without clothes in a cold room for a prolonged period of time? DR. PIERCE: No. From our public meeting, we were not -- that wasn't -- that didn't come up. So, we wouldn't be able to say, but I would think not. MR. SETLOW: The infantryman mentioned that he had to spend a whole month outside in Fairbanks in one winter camping out in tents and sleeping bags and so on, and it was a pretty miserable experience. The only time that they could warm up was when they went into the physician's warmer barracks to be tested for their physiological make-up at the time. DR. ROYAL: The last question I had was, Dr. Rodahl testified that when the plane would land, the Natives would come running out to the plane and seek medical treatment, and went on further to say that he trusted the Natives and the Natives trusted him. Were there any people remaining from the Native side that described such a scene, where the Natives said that when the plane would come, that they would greet the plane, and that this was a -- regarded as being a good event at the time? DR. PIERCE: At the meeting, I don't remember this specific thing about Dr. Rodahl's plane, but certainly we heard many instances of Natives saying that in their contact with the physicians from AAL, they extended their trust and goodwill, and they thought that the doctors were doing good things for them, and that they were glad and anxious to get the medical attention, and, furthermore, that they felt that they could not resist federal authority, and they -- much verbalization of that by many different people, some of whom were participants, and some of whom were telling about what their families had told them. MR. SETLOW: At Arctic Village, the subjects who were there felt that it was a very unusual circumstance to have an airplane come and land because there was so little exposure and contact with Western society, and, so, they did relate and remember very vividly the landing of the airplane at that time because the location to land was very remote. They saw it. They had to cross a body of water in order to get to the airplane, and they in fact did make a very big effort to get over to see who had come. DR. FADEN: I've got Sue, Ruth, and Lois. Is there anyone else? All right. Sue? DR. LEDERER: One of the specific charges to your committee was to determine whether this I-131 series was conducted in accordance with generally accepted guidelines for medical experimentation at that time. I wanted to ask, how did you determine what were the generally accepted guidelines for medical experimentation in the 1950s? DR. PIERCE: We can answer that, can't we? Well, we're so constrained about what we can talk about. We -- we did historical survey of what available kinds of things, and we were much guided, of course, by bio-ethicists, and, so, we went through the development of Nuremberg trial cases and what was happening in literature, available in prestigious journals at the time that the Iodine-131 exposure, and, so, that was the chief way. Just by looking in literature search from those available documents. DR. LEDERER: Have you shared any of that materials with our staff, for example, or -- MR. SETLOW: No, not at this time. DR. LEDERER: Is that material that would be available to us once your committee charge is completed? MR. SETLOW: Certainly. DR. FADEN: I think it's likely that our committee reports are going to come out about the same time. So, as I understand it, our staff has been providing your staff or you, Mr. Setlow, with the documents that we have -- MR. SETLOW: That's correct. DR. FADEN: -- that bear on this activity. Ruth, and Lois. DR. MACKLIN: I have a couple of additional questions. Let me just ask the first one and wait for an answer, and then go on to the second. I'm interested in what information was given to the Natives, to the subjects, either directly or through their elders, and in particular, were they told either in advance or possibly afterwards that if any problems were found or discovered with their thyroid, that they would receive any treatment for their condition? DR. PIERCE: Well, at the public meeting, they didn't say that they could receive any treatment. What they were told, I suppose most of them said that they were told they were having -- that they believed that things were being done to benefit their health. DR. MACKLIN: They believed that that was what was going on in the research at the time. DR. PIERCE: I'm not sure that we can say what they were told because they were -- the ones that we talked to at the public meeting were recruited by an intermediary, maybe not even the elder, but maybe some of the elder's delegate, and told what the -- that person thought they understood the experiment was. DR. MACKLIN: What did Dr. Rodahl say that he told them or told the elders or told the interpreters or whoever to convey to them about this question about treatment, if there were some abnormality found? DR. PIERCE: I believe he answered in a general way, that he just told the elders in the village that that was the custom, and a matter of respect, told them what he wanted to do, and what he needed, and let them execute the situation the best way that they saw fit. DR. MACKLIN: That does lead to my second question. I think you mentioned that Dr. Rodahl was an anthropologist -- DR. PIERCE: Well, he -- DR. MACKLIN: -- as well as a physician? DR. PIERCE: Some of his writings certainly were anthropologic, but he was a trained physician, yes. DR. MACKLIN: Right. Well, I know he was. I'm asking whether he had official training or experience in field work. DR. PIERCE: Oh, he certainly had experience, yes. DR. MACKLIN: Yeah. And I'll say again the reason for my asking that, and that is, there is a professional ethos in the field of anthropology that one accepts and honors the practices and procedures in various cultures and doesn't try to impose as a researcher from the West or the North or wherever, from a different culture, try to impose any values or customs that would not otherwise be part of the practice of those people. Now, if that's the case, and if Natives in Alaska usually or typically had contact with outsiders or even other people through elders, that might militate against a practice of informed consent, and one might imagine an anthropologist saying, well, I mean that's something that they may have done or talked about at Nuremberg, but we're talking now about going where there's some Natives who nobody ever gets consent. Was there ever any discussion about customs and Western practices or Western -- DR. PIERCE: We discussed it, of course, and we actually have searched some of the literature relevant to that period by anthropologists doing field work in that area. So, we have -- some of the questions like that, we did discuss. Relative to Dr. Rodahl, at least my reading of his work is that he did at least verbalize in his writing that he had these same feelings we're talking about, but -- and I think -- MR. SETLOW: It would be perhaps better to characterize him as an amateur anthropologist. He utilized the opportunity of visiting these remote villages as an opportunity in conducting his medical research to also take information and record it about the villages that he visited. DR. MACKLIN: Well, an amateur might want to act like the professionals act. Well, one last question, and that is about, was there - - did anyone at any time say anything about payment that was given or offered to the elders, to the Natives or anyone as a -- I won't even say inducement, but any payment, inducement, compensation, or anything that this was a way of getting them to cooperate? DR. PIERCE: Well, we questioned a number of people about that, and quid pro quo kinds of situations. The doctor would come in and do treatment or he would -- we asked specifically if people were given rifles or ammunition, things of this sort, and sometimes there seemed to be some motivation that there was some quid pro quo. At other times, I think, at least in my interpretation, the public health -- at the public meeting, people were just acting on good faith in their relationship of an authority figure coming in that was a doctor. MR. SETLOW: One person from Fort Yukon who testified said he recalled being offered $10 for this particular experiment. None of the others that we spoke with remembered receiving any payment. DR. MACKLIN: I guess I'm -- I'm sorry if I'm not making my questions sharp. There are really two groups we're talking about, namely, the Natives or the people who were the subjects in this experiment, and then the personnel who conducted the experiment, and what I should have been asking but didn't is from each, did the researchers ever say they offered anything to the elders? So, some people said something, and others remembered something else, and maybe it would be variable practical. DR. PIERCE: I think that's a fair statement. DR. FADEN: If we could, Lois, and Jay, and then perhaps we can conclude this. Lois? MS. NORRIS: It is my understanding that your investigation is limited to the I-131 study. DR. PIERCE: Yes, ma'am. MS. NORRIS: But that at your public meetings, you received comments from villagers and from subjects of the I-131 study who also described procedures in other studies involving this group of people. Did you get any sense that radioactive materials or radiation was used more than once or in more than one study on the same subject population? DR. PIERCE: At least one person I believe actually had been a participant in more than one, but, yes, it was not uncommon for the speakers at the public meeting to indicate a lot of other experiments, some radiation, some not. Some were not radiation experiments. Different kind of cold weather experiments and participation in a laboratory as well as in the field. So, there were multiple protocols at different times, but -- MR. SETLOW: I think as far as the hearing itself went, we found individuals who participated in more than one experiment. None, my memory on that, mentioned that they had participated in more than this Iodine-131 study. The one individual from Fort Yukon mentioned that he had participated in, he could recall, three separate procedures. One was this Iodine-131 study. Another one was a study where a surgical sponge was implanted in his chest for cholesterol and blood serum experiments, and he was paid money for the implantation and removal, and also he participated in an AEC whole body radiation test that took place about 1960, when the AEC was looking at the body accumulation of radiation in Alaska Natives as a result of atomic testing by the Russians during that period. MR. GUTTMAN: You mean a body counting episode? You don't mean that he was -- you mean he was -- MR. SETLOW: He was not irradiated. He was tested to see what the cumulation of radioactivity he had. MR. GUTTMAN: It was a body -- that was a passive activity? MR. SETLOW: Right. MR. GUTTMAN: Okay. DR. FADEN: Jay? DR. KATZ: Dr. Pierce, I notice on Page 8 of your statement, that when you said that Dr. Rodahl testified that the villagers came to him and immediately wanted their ailment treatment, and then he said the physicians treated them because they were medical men. Did you explore with Dr. Rodahl, did the committee explore with Dr. Rodahl the confusion that he created? They should not have treated these people. They should have said we are not coming here as physicians, we are coming here as researchers, and by portraying that -- by being double agents in these situations, they really created a great confusion because this is what also happened, is this international, not just limited to Norwegians, in the Tuskegee syphilis study, the same thing occurred, that the Public Health Service physicians arrived each year to treat them, quote unquote, but they were really there primarily for research purposes, and this could have created a lot of confusion. Did you go into that? DR. PIERCE: Dr. Katz, I think that we didn't have to go into it because he himself offered a great deal around this, and I think his position would be that going to quite remote areas, where the small bands of people actually -- that it was a humanitarian kind of thing to do to come in and treat. First, you'd have to do all the treatment things, and the people would expect all manner of things, even dental things, and then he would do the thing, but -- so, we didn't pursue it. DR. KATZ: Well, it raises questions about what is humanity. DR. FADEN: We are very grateful for your taking the time to come to us. Can I just ask? Do you have a date for when your report will be released or do you know? MR. SETLOW: There is really no specific date. Our hope is late Spring. DR. FADEN: I've heard that term before. MR. GUTTMAN: Don't you have a charter? Don't you have a charter? MR. SETLOW: Just like your report. MR. GUTTMAN: Don't you have a charter with a legal requirement or anything like that? MR. SETLOW: No, it wasn't written into law, thank goodness. DR. FADEN: Thank you both very much. Recommendations: Looking Backward (cont.) DR. FADEN: Okay. We should just go right on. If we could return -- we left Henry hanging. Just for now, we are scheduled to close at 4:30. We can going to stay a little later? Okay. We can stay a little later. All right. Because I think that we are intensely into this, that not everybody wants to do this, but we'll stay a little bit later. For people who can, can. If not, not. What can we do? Tomorrow, unfortunately, we start at 8, just so you all know. Okay. Yeah. That's what I think. Henry, you had the floor when we -- when we -- thank you. Good. Get started. Thank you. I wish we could decide what life would be like if we only had to deal with one study with a 137 people in it. Like the UCSF report, they've got 18 subjects. National Academy of Sciences has a 120 subjects. Okay. We'll leave that with that comment. Okay. We wish them all very good luck. Henry, have you thought? DR. ROYAL: Yes. Just -- I think I need to think more, but just to give you some initial feedback or maybe clarification of what it is that i'm trying to say. I don't think that science, politics and economics are a good mix, and you're basically forcing scientists to make decisions which are very influenced by the politics and economics of the decisions that are being made, and I think it subverts science. If it's going to be a political decision or if it's going to be an economic decision, people should have the courage to say that, and, so, those are my preliminary thoughts. DR. FADEN: Okay. It's open now. Ruth, Eli. DR. MACKLIN: Pat has been calling for something in the way of justifications all along, and I haven't thought this through, but it may be a way of trying to get at this issue, which doesn't answer Henry's problem with that mix, and that is in what circumstance would the greatest or the greater injustice be done? Now, I'm posing that as a question for us to be thinking about, going back to Ken saying, well, if you don't like this one, here's the alternative, and I take it that underlying Ken's comment about the alternative, namely everyone is presumptively in, everyone who has a disease, was the subject of radiation is presumptively in, but no compensation for anyone because that would just open the flood gates, which calls upon us to ask which of two situations, presuming everyone in and with the result that nobody gets compensation, -- MR. FEINBERG: Situation 2. DR. MACKLIN: Situation 2. Situation 2. In contrast to doing the kinds of things that Henry and other scientists might not like but might be the only way to get at the presumptive causation in which case at least some people, those who can demonstrate that -- or for whom it is demonstrated, that there was a probable causation, presumptive causation to get compensated or appropriate health care. Now, just to -- I mean there may be things in between, and I don't know. I mean I know what we're looking at is the strict liability versus the proving in the tort system, and maybe we do have to ask once again whether there is something in the middle, that is, we have only two alternatives, but am I correct, Ken, in inferring that your answer, if we had to ask each other, what would be the more unjust of the two situations, that your answer would be it would be more unjust if no one received in situation 2, received compensation or reimbursement for health care costs than it would be -- I'm sorry -- it would be more unjust if no one did, than if some did under the scheme where there had to be a demonstration of presumptive causation? MR. FEINBERG: Well, that is a tough question. I would prefer for the reasons Duncan says, I would prefer situation 2 along the lines as it's currently drafted, because I've witnessed in other contexts efforts by scientists to develop some presumptions. I mean if you look at our report two to three years ago, the catastrophic nuclear accident report, commission like this, where the commission called for the creation of certain independently-verifiable fair presumptions on dosage, but that's my preference. However, if Henry is convinced that that is a slippery slope which will do an injustice to scientists, to doctors, to victims, one falls on one side of the line, the other falls on the other side of the line, the line is very mushy, one person gets compensation, another doesn't. I mean it may be that what's fair is to say that everybody either gets or doesn't get, and I mean that's an alternative. I would be very much personally against everybody getting. I think that recommendation will collect dust on a bookshelf. DR. MACKLIN: Well, I'm just asking that we think of it -- DR. FADEN: I think that's a very good way to phrase it. DR. MACKLIN: But then I think in response, if I may just for a second, in response to what Ken just said, I think whenever we're talking about justice, it is appropriate to ask who might be treated unjustly or to whom the justice -- the evaluations or assessments of justice apply, and I didn't have in mind actually injustice to scientists or physicians, but, rather, strictly thinking of the class of individuals to whom these assessments took. Who would be treated more unjustly, thinking of it in the categories of victims, and you partially answered that. DR. FADEN: I've got -- okay. Go ahead, Ken. MR. FEINBERG: Just understand that when you -- and again, I'm in favor of situation 2 for the reasons Duncan says, but my experience tells me that when you ask scientists and doctors to articulate these presumptions, they are on the hot seat in Agent Orange and some of these other cases. The Center for Disease Control was widely criticized on these presumptions. Now, maybe if Phil were here, Phil would talk about an independent blue ribbon panel, but I think it's a very difficult assignment, and that's why Henry's view carries a lot of weight with me on this. DR. FADEN: Wait. Let me just make sure I've got everybody here. Dan, are you right on this point? Then I've got Eli, Duncan and Mary Ann waiting. MR. GUTTMAN: This is a question. What we have is this is the world of policy today. We have -- actually, we have a whole host of these committees. This is the vet situation, and we all know that's the complaint with the vet situation. The justice question would seem to be assuming, as everybody seems to agree, these are deficient for whatever various reasons, what would you do to end up 10 years from now -- the result 20 years from now going to be, well, it's a low-level risk, third of the scientists win, because nobody can ever -- what would be the way to move to another policy solution to this? And if there isn't, then, you know, -- I mean put in the justice equation, how would the country move to another way of dealing with these situations, and there's no alternative that we can see, that would be a different matter than, you know, than if you could think of some way of getting out of this box. DR. FADEN: So, if there's an alternative 3, that would be nice, right? MR. GUTTMAN: Or a way of moving -- if there was something that would be a stimulus to moving to that direction. Does that make sense? DR. FADEN: I've got Eli, Duncan, Mary Ann, and Henry. Eli? DR. GLATSTEIN: Well, with respect to situation 2, I think the problem is that these various probabilities and the problem of coming up with probabilities of causation, certainly they're less than the 100 percent, and there's no -- there's no cancer or any other condition related to radiation that is -- there's no situation that comes up where the problem attributed to radiation can't be seen without radiation. So, there's no specific diagnosis that you can make that says this is a radiation-induced problem, and say that with a hundred percent confidence. You can say it with likelihood in certain situations, but not very many, and as you broaden it out, the probabilities become less and less, and it becomes a statistical nightmare. With respect to situation 1, I would like to see situation 1 focus explicitly on the business of population exposures and intentional releases and the atomic vets because I think those are the -- again, I'm just concerned that we're lumping together the medical experimentation with these population exposures, and I think it's -- I think they're apples and oranges, and I think we have to keep them separated. I think that we should discuss the feasibility at least for those people who have active problems, medical problems, who were exposed without their knowledge or consent or without -- without proper information as in the case of the atomic vets. People have gone through a Kafka-esque kind of situation in trying to get information and been thwarted and frustrated at every opportunity, I believe, when they have medical problems that are thought to be possibly related, and I think they should be entitled to get medical care through the VA system. That sounds especially great, but that's something, and I think we should think about trying to recommend that. At least it gives something, and I think that they need it, and I think that the right form of compensation that we're talking about, I think, is something that has to be decided by the Congress. But I think if they have medical problems, and they are thought to be related to being a down-winder or exposure through the military, I think we owe them that. I think that as far as the patients who've been part of studies, who presumably thought, whether they had proper informed consent is almost irrelevant at this point, but who were treated with some expectation, even if -- even if far-fetched, but expectation of benefit, I think that the form for remedy there has to come through the institution, through -- or individuals with whom they dealt initially. I don't think that's the government's responsibility. Even if the government was paying the bill for some of the experimentation, that was a contract essentially between physician and patient, even if it isn't documented on paper, and I think that's where that responsibility purely lies. But the population exposures, I think, are much, much different and much more serious, in my mind anyway, and I think that those have to be addressed not only in terms of support for medical problems but in terms of compensation, and I think that's -- I think we need to make the distinction between these population exposures and individual experiments. DR. FADEN: The chapter is set up to do that. The problem is there are no recommendations in here now for populations. DR. GLATSTEIN: Well, we talk about the situation 1 and situation 2. DR. FADEN: Both of those are still -- are set up right now to apply to subjects in bio-medical experiments, not to the - - DR. GLATSTEIN: Situation 1 I don't think really does. Situation 2 does. DR. FADEN: Situation 1 is supposed to. It may fail to from your point of view, but it was intended to. But I hear what you're saying. DR. GLATSTEIN: Well, but situation 1 is talking about record demonstrates that the government attempted to keep information regarding these experiments secret in order to prevent citizens from seeking timely redress. I think that's talking basically about population exposures. I do not believe that's really referring to medical experimentation where the government was blocking. There may have been frustration getting records. There may have been a cover-up. I don't see that that's a government problem in the medical experimentation. I see that as -- if there is a problem in getting their records, I think that is an institutional problem. DR. FADEN: Oh, do you want -- MR. GUTTMAN: I think it's fairly simple. We're talking -- hypothesizing situations, such as perhaps the plutonium injections, where the subjects didn't even know they were part of an experiment, and the government said to the doctors, you guys want to publish these reports, you can't, somebody may find out about this. I mean it's that -- DR. GLATSTEIN: In that instance, that particular instance, that belongs here. MR. GUTTMAN: Right. That's one. DR. FADEN: This was -- DR. GLATSTEIN: I agree with that. MR. GUTTMAN: But your point is -- DR. FADEN: This was crafted with that in mind. DR. GLATSTEIN: I agree with the plutonium stuff being under here. MR. GUTTMAN: Right. Your point is the big point, that it's not there because it's such a big point, we have to think about it separately, I guess. That's what Ruth is saying. DR. FADEN: Yeah. But that was a careful clarification, and you were -- I think it was earlier in Nancy's point. We have to be quite specific about what we say because people don't understand. Understandably, it's like you can't answer -- we've got to come out and say what we're talking about. Situation 2 is quite the opposite. It's not an enumeration of particular experiments. It's a broad context, and that's what we're struggling with, but, you know, this is -- we have that big hole, and we haven't to fill that one in yet. DR. OLEINICK: Yeah. But Eli's absolutely right, that this -- the way this is crafted, it really sounds like the -- almost could be lifted and put into some of these population experiments. DR. THOMAS: That's exactly what I said before the break. DR. FADEN: Yeah. Okay. Sorry. DR. THOMAS: I proposed that for the mass exposures, we go through the exercise of considering situations 1, 2, 3 and 4, again in that context. The specific rules may differ, but I don't see any reason in principle why the rules should be different. DR. FADEN: Duncan, you happen to be next in line. DR. THOMAS: Yes. DR. FADEN: Did you want to say something? DR. THOMAS: Well, I wanted to now return to the bio- medical situation. DR. FADEN: Okay. Fine. DR. THOMAS: Henry and I are in complete agreement about the magnitude of the uncertainties, both in our knowledge of population risks as well as all of the facts of the individual situation, which would factor into a calculation of a probability of a causation. Where I think we differ is that Henry looks at the magnitude of those risks and throws up his hands and says, I don't see any scientific basis to arrive at a rationale conclusion, and therefore I'm not going to participate in this exercise. To me, that's tantamount to a decision. It's a decision not to decide, which is tantamount to a decision to take no action. Now, in my view, there is a scientific basis for making a decision when in the presence of uncertainty. I mean it is a well-developed science. Well-developed branch of statistics known as decision theory, and decision theory is essentially a weighting of probability -- of -- of your decision options, in this context, for example, to award or not to award compensation. For the subtleties, we could grade the amount of compensation, but let's suppose it's a binary decision that we have to make, and we play a little cost benefit game. Well, let's say a cost benefit game -- analysis, and we consider the whole spectrum of possible values for what that true probability of causation would be. Each of those possible values has a probability assigned to it based on our uncertainties about population risks and individual characteristics, and for each of those possible values, there is two decisions that we could make, award/not award, and there are hazards and benefits associated with those possible decisions, and that's where this point comes in. Right. At this stage, to do a proper statistical decision analysis, you are forced to confront your values. What is the utility associated with a false positive and a false negative conclusion? Now, this is exactly where scientists are extremely uncomfortable because they're now asked to make public policy decisions which they're, of course, not -- no better qualified than anybody else. This is the point where it needs to be turned back to the policymaker and asked, well, what policy do you wish us to do? You tell me the policy, I can do the calculations. I think that's the right way to think about it. I think we should not be paralyzed by indecision. DR. KATZ: Can I ask a question? DR. FADEN: Sure. Jay wants -- DR. THOMAS: Well, I -- let me finish. I'm basically saying that if we can elicit either from this group or from the policymakers to whom we report what their values are, we can say a properly-constituted scientific body can do this calculation and come up with an equitable set of criteria. DR. KATZ: Can I ask you a question here, because I wonder whether it's necessarily in conflict between you and Henry because in your situation, also certain decisions are involved, whether to award or not to award, if I understand you correctly, and that is a political decision, and you are asking the scientists only certain specific kinds of questions, though beset by -- which he can answer under your scheme, if I understand you correctly, with all the uncertainties that have been brought to bear on the answer to the question, and then I think some medical people can do, but then it's your responsibility as the political person to see whether you want to put that into your decision- making tree or not to put it in your decision-making tree. Am I correct? DR. THOMAS: Yes. Let me share with you my fantasy about how RECA came about. It didn't happen quite the way I just described. First, NIH was empowered by Congress to write the radio-immunological tables. So, a bunch of scientists got together in a room, and they did various statistical analyses, and they came up with a set of numbers. Then Congress got together, and they said, well, let's see, now what are the costs of this program going to be, and how many -- what's going to be the fall-out from the -- the political fall-out from awarding too much compensation, too little compensation, so forth and so on, and they did an informal cost benefit analysis and decision analysis, and that's not a bad way to proceed. What they did was they rolled the policy decision and the political decision-making together into one single amorphous process that nobody really quite understands. Sort of like making sausage, I'm told. But with input from the scientists in the form of this set of tables. And that's probably life. I don't -- I'm not sure that in the real world, we can do a whole lot better than that, but I would say in an idealized world, the better way to do it would be for Congress, first, to give guidance to a statistician in terms of what their utilities are, exactly the points that you talked - - you raised. DR. KATZ: One final question. DR. THOMAS: When we let them do the calculations. DR. KATZ: In that report or that study, was it made absolutely clear that what the limits of the scientific evidence was, what the political input was that led -- and what the economic implication -- was too much attributed to the contribution by the scientists? DR. THOMAS: Yes, no and no, with regard to the NIH table. Yes to the uncertainties. Those are explicitly discussed by design, by instructions from Congress. No to the economic considerations, and no to the political considerations. It was purely an analysis of the -- of what the data says, the scientific evidence. Now, Congress goes off and does its own thing. How they did it, I don't really understand. But you see what they came up with. DR. GLATSTEIN: You bet it won't be clear. DR. KATZ: That makes me a little bit paranoid. DR. THOMAS: It should, and that's why if we have a committee of experts, whether it's this committee or a committee that we can recommend how it ought to be properly structured for this purpose, I would have more confidence in them doing it than I would in Congress, but they have to get the instructions from Congress first as to what the utilities are or they will be totally unable to do their job. DR. FADEN: Right, right. Mary Ann, and Henry, and then I'm going to just ask Pat, and then maybe we should get a sense of the time, and I'm inclined to say that maybe -- we'll pick up either in the morning either with this or go to the Notification one, which is going to be probably just as straightforward as this is. So, but this is important. Mary Ann? DR. STEVENSON: Duncan's answer to one of my concerns, but I share with Henry the same concern or a concern that if in situation 2, the burden of the proof -- well, it's on the subject. It's going to turn on the science, there are going to be instances, and I think, you know, you may know the isotope and that's as far as it goes. So, it's almost as useless as having nothing. It is as useless as having nothing, because you can't come up with the scientific estimate of risk. DR. GLATSTEIN: You are implying no need to reproduce dosimetry. DR. STEVENSON: Right. Because there is none. DR. GLATSTEIN: That's a cop-out, that whole issue. DR. STEVENSON: But then another area that I'm concerned about, and again Duncan may be able to help out on this, is because I'm working with the childrens' subcommittee, in trying to establish credible causation there, the data is sorely lacking. I mean much of what we've based our estimates of risk, particularly for cancer, is the atom bomb population, and in the case of children, that population is just coming of age, if you subscribe to a relative risk model, where excess cancers will be found. So, the data is not in. We just don't have it, and much of our data regarding carcinogenesis in children is also based on external sources, diagnostic radiology procedures, that kind of thing, and as far as isotope procedures, it's really few and far between, and again you can jump in. So, trying to come up with logical, credible methods for even estimating is a real stretch, and you may have just a hung jury on so many cases, that it will be sort of useless. I mean I think it's going to be a sizable population of cases that we're going to end up unable to even guess, and that worries me. So, we have to some fall-back beyond situation 2. DR. FADEN: Well, this is very helpful because it falls into Ruth's way of saying which way do we want -- you know, where is the greater injustice, and do we want to go further? If we decide that they still want to struggle with this effort of trying a way to construct a situation 2 so that somebody's medical care is paid for. If there's a very high proportion of cases in which there's going to be inadequate information even to plug into a table, then what's the view about which way that presumption should go? If you don't know anything other than, you know, Mary Smith was in the study, and then that study involved I-131, and she now has thyroid cancer, and those are all the facts you have, and they might be all the facts you have, what does that -- what happens then? Then you go back to is it this committee or is it some other committee to whom it's deferred to supply the political value judgment that will in that case, she doesn't get anything, or in that case, let's pay for her thyroid cancer? Where does that come from? DR. MACKLIN: Well, one way, it may not be a felicitous way, but one way to do that to finesse the problem that Ken keeps reminding us about, which is people within a certain class of victims are going to look at others and say they got it and I didn't, is to make these kinds of justice determinations by the class of individuals, rather than look at who can come up with which data. The probability and utility calculation, the decision theoretic model, would look not at the individuals but rather at the classes. In other words, -- DR. FADEN: If you can do it. DR. MACKLIN: Well, I don't know what you can do. I mean I'm speaking hypothetically, but I mean it's easier in some ways -- it's hard, but it's easier in some way to talk about questions of justice when you have classes of individuals, because the injustice or the felt injustice or the outrage or whatever that may come when you're looking within classes, by classes, I mean people who fall within the certain category of the radioactive iodine or the total body irradiation or what have you, there's more likely -- I don't know that it's more likely, but at least the worries -- you think that there's danger of people crying injustice, no matter what, right? Probably true. DR. FADEN: Probably true. So, if we -- Henry, and then Pat, and then Ken. Henry, do you still want to speak? DR. ROYAL: Why don't I pass? DR. FADEN: Pat? MS. KING: I said I wasn't going to say anything because I really didn't want to get into this, because I have so many troubles, but it seems to me in listening to some of the comments I've heard around the table, there's -- we have said a lot. Situation 1 is a situation which needs to be addressed. Situation 1 is a situation where you have a culpability described in a certain way here. Nothing about causation, and nothing about harm, and the government's culpability in keeping current language, preventing citizens, is enough compensation. The next logical place to think about, which we don't do in this report, is to think about another area of culpability and find out how we would react to it. The next area for me would -- you can do a lot of great culpability examples, but the next big obstacle you come to is if you have the case where a person could show that their consent was not obtained, you can show no consent, we don't have a bad historical record that I could conceive of. No consent. What would we do with that? Is that a case where compensation is warranted? As I -- if compensation is not warranted -- DR. FADEN: No, no, no. MS. KING: -- and nothing follows from that, we're going to get to situation 3. DR. FADEN: All right. The reason I'm thinking about it is that in some ways, what you're doing is drawing back to the exercise that we gave up on or I've frankly given up on in the last -- the last session, when I tried to march us through every logical -- MS. KING: But, Ruth, my point is that that is where the discussion has descended to now, because by looking at situation 3, and focusing on causation, in a contest where you're making presumptions now about culpability, all you've done, it seems to me, is backed yourself back to that same spectrum; that it would make no sense to try to do anything here if in your head you're not prepared to say -- DR. FADEN: Not quite, Pat, because what this -- this situation 2 stipulates physical harm. Now, the one you've just described, you would have no consent but no harm, or you could have no consent and harm. MS. KING: That was going to be my next -- DR. FADEN: So, you've got two different -- MS. KING: That was going to be my next, because I think we drop off long before we get to situation 3. I mean what you all are calling situation 2. I think now, given the discussion that I've just heard about how to deal with situation 3, which is the hardest, no evidence of consent, and possible evidence about harm, that is what we're struggling with. How would we react in the situation that says the consent part is clear, there was no consent here, it was not obtained, you got the same harm situation? If we would have this discussion in the stronger context, I think it would be clearer. It sounds to me from I hear that people don't want to take a split but very much in the direction of this is too hard or it will make us look like all these other reports. But I think it's because we made this leap. I suspect -- DR. FADEN: I'm willing to try it. Tell me more. MS. KING: I would just suggest that we might not be willing -- I'm waiting to hear the debate actually about what Eli proposed, which we have not had, which is for intentional releases, but where we have evidence of government culpability, where causation is really a nightmare, that I would like to hear this committee debate what it's going to do with populations, not individuals of a bio-medical experiment, with populations and conclude that that culpability is enough to carry the day by itself, without reference to causation, because I think that that's not so clear to me. So, it's not so clear whether the committee would agree, and I think that to jump from first to number 2 has us debating a lot of things that we may have dropped off in our thinking about much earlier, and I don't mean to return us to that discussion we had last month, Ruth. That was not my intent. My intent was this issue lurks elsewhere, and why don't we make the stronger case for we should try the effort here and see what the committee says. DR. FADEN: Ken? MR. FEINBERG: I don't believe that one can conclude that there are situations where this committee is prepared to say that there was government culpability in the absence of consent. I thought -- I thought that the whole point of situation 2, and the presumption of strict liability in the terms of the government's conduct, was that we could not help but make invidious distinctions as to culpability that occurred 30-40-50 years ago, and that if we could do what you suggest, that would be a good intermediate situation. But I thought we had concluded that fine distinctions as to whether the government in the area of consent after culpability or not were not possible in light of the historical record. So, in situation 2, we presumed that the government acted inappropriately or at least we presume it's irrelevant. DR. MACKLIN: But I think what Pat is calling for -- I agree, and that's -- I thought that a moment ago, but that couples -- since we went to situation 2, because of the impossibility or the difficult, extreme difficulty of determining whether or not there was or was not consent. So, there's the strict liability of consent, but now coupled with the probability of harm, whereas Pat is asking us, at least as a thought experiment, forget the harm for a second, suppose you knew there was no consent. Now, granted, the reason we came to 2 was precisely because of the impossibility of knowing or not knowing, but in order to think clearly at least about the justice question, would people -- would we view that there was government culpability and that justice required compensation for people who were, putting it this way, wronged but not necessarily harmed? That is, I mean take and flip what we have in 2 and say let's say we could demonstrate no consent, and forget about the harm for a moment. I mean strict liability on whether or not anybody was harmed, but the consent issue, and that's -- MR. FEINBERG: I thought we can't. So, it's -- DR. FADEN: It's a thought experiment is what we're saying. DR. MACKLIN: The thought experiment is only in the injustice category for a moment. Pat is asking us to think, is there anything besides a cover-up that makes the government culpable. I mean I think -- DR. FADEN: No. I think Pat's saying conceived culpability. The issue is what ought to follow. What would this committee recommend, assuming there was such a case, although we haven't -- it doesn't look like we have, but let's say there was such a case or series of cases, where it was clearly demonstrated that consent had not been obtained, and the government had a causal -- had a responsibility, all that stuff. The government's responsible for having subjects in experiments that they are sponsoring, that consent was clearly not obtained, so that was wrong. So, we're all saying a wrong thing happened, and the government's culpable for that wrong thing. What would we recommend be the right response in that situation? We've already said an apology because everybody's getting an apology. So, that's not the issue. So, is there anything other than an apology that we would recommend in this thought experiment as justice? What's the right response in that circumstance? MS. KING: The reason I did this was not to return, but it got introduced when Henry started by saying it seems strange on the ethical side, we -- DR. FADEN: Can I lay out what I think might be a misconception because this may well be very helpful? Maybe what was lurking behind situation 2 was a thinking like -- maybe the thinking is faulty. If there had only been a wrong, okay, we know that's very terrible, persons had been used without their permission in totally harmless experiments, nobody was harmed, the conclusion might have been a very big apology but no money. Okay? If there had been no consent and people had been harmed, big deal money. Okay? Or at least something because that would be a wrong and a harm. Okay. Now, what we have -- then we would get wrapped up into, well, what's the proof of the harm, but if -- so, situation 2 says, well, look, since a wrong alone would probably not warrant the response of compensation or wrong and harm together would warrant a big deal compensation, what we have is a fact situation that says it would be very hard to tell if anybody in fact was wronged. Reason to think that at least some people were, because we know there were rules, and we have evidence that in some places, they didn't implement them. So, odds are there are people out there who were wronged. We just don't know who they are, and they're not going to know who they are until -- it would be very hard to find out who they were. Okay. So, and some of them may have been harmed. Okay. But now we've got this problem because we don't have the perfect fact situation. So, we'd like to take care of the people who were harmed on the presumption that at least some of them, not all of them, were also wronged, and we know there are people out there that were harmed, some number. We don't know if it's a lot or a little. Some subset of those were culpably harmed or whatever the right legal term is. They were harmed in a way that other people should be responsible for, and since we can't tell who they are, one from the other, we'll reduce the remedy, okay, and give it to everybody who was harmed. Now we're -- so, that's, I think, the reasoning that's just -- MS. KING: That goes to answering the causation question. The causation dilemma, because I don't think of causation in scientific terms. Back to question 1. There -- I mean situation 1. Just float right on by causation because something bigger is going on. Now, why are we not willing to float on by it in situation 2? That's what you just described. So, what you're saying is we're doing trade-offs, and the issue ought not be focused on, I don't think, right now, proof in scientific causal terms. The issue should be focused on, I think, on how strongly we read the record about the likelihood that consent was not obtained in most of these instances. I think that's the starting point, because if we read the historical record as being a strong, strong probability that consent was not obtained -- DR. FADEN: Or adequate consent. MS. KING: Or adequate consent, however you want to phrase it. DR. FADEN: Adequate consent. MS. KING: Was not obtained in certain situations, then I'm prepared not to require the latest in causal connections because I don't see that doing anything differently than I've done in situation 1, quite frankly. I have made -- I'm comfortable in the public policy arena. I have made my public policy trade-off about how I think about what the government did or did not do. What I have not heard us really discuss is why we were comfortable with the language of presumption, because if we're really comfortable with the language of presumption, we thought that through, and we think the evidence is that compelling, then I tolerate a great deal more on the harm side. DR. FADEN: The presumption that it's reasonable to think that at least some of these people were enrolled in experiments without adequate consent? MS. KING: See, our presumption justification here is we have historical evidence. We can't tell one way or the other. Let's just presume. I don't think that's what we mean. I think that what we had in mind here was that the historical record is not helping us, but having -- taking a look at all of this in its entirety, that we strongly believe that in most instances, it was not obtained. DR. FADEN: Well, -- MS. KING: And if that is our conclusion, then that has implications for how we think about the harm and effect of it. Now, what -- I mean how do we think about it? I don't know if everybody would think that's what the presumption means. DR. FADEN: I think that's right. I mean it comes from several sources. You've got that huge deliberation the committee did that reached the conclusion, yes, the government had consent standards, and we adopted them. Then we've got this other source of information from the oral histories and the secondary sources and the scholarship, and we have doctors all over the place saying we didn't normally get adequate -- we didn't think about informed consent in those days, that wasn't the kind of thing we did, that's not how we conducted medical research. Well, if the government had standards that said you had to get consent based on information, let's not use the term "informed consent", but consent, and you had to give people information on the one hand, and we have the doctors who by and large did their research funded with federal dollars saying that wasn't our practice, nobody ever told us to do it, okay, then odds are there were lots of people enrolled in studies without the opportunity to give adequate consent because the government didn't connect its standards to its instructions or whatever happened to the people they were funding. So, you're right. There is that -- at least for me, that's how I understand it. MS. KING: And the flip side is true, too. If we read the record, it's not leading to a strong conclusion. MR. FEINBERG: I would just like to understand, Pat, where you go with this. Assuming for a minute that one drafts a guideline that says where there's strong evidence of government culpability in the -- in failing to get consent, strong, strong evidence, failure to get consent, then are you prepared then to recommend that everybody who was the victim of that failure to get consent is entitled to compensation, regardless of harm, physical harm? MS. KING: No, I didn't say that. What I said was I would not require what I understand to be strict standards of causality in scientific terms, when I think scientific terms. I can be much more comfortable in making rough estimates about the likelihood of the connection between the exposure and whatever happens to that person that we consider as a harm. In other words, I'm reducing my requirements of proof on the causation side, is what -- is where I'm headed, because the discussion here has been about how closely can you draw this -- MR. FEINBERG: I just -- all -- I'm just -- I don't understand. What are you reducing it to? What's the causation now? What is your causation requirement? MS. KING: Basically, this is what I'm having a hard time articulating because this is not my field, but I think what I have heard so far from Duncan and our limited discussion is at a population level, we know some connections between disease and we know some connections between harm, disease and exposure, and I might have some minimal requirement that you be within that ball park, for example. Do you understand at all what I'm saying? DR. THOMAS: I think I understand what you're saying. Maybe I can -- MS. KING: Maybe you can explain it a lot better than I can explain it. DR. THOMAS: Basically, she's saying let's have a trade-off between the strength of the presumptions for causation and the strength of the presumptions for culpability. That's going back to this irony that Henry pointed out before the break. So that we -- in the absence of strong evidence of culpability, we would have rather strict criteria for causation, and the strength in the presence of strong evidence of culpability, we would require weaker, and, of course, some committee's still going to have to sit down and write the -- MR. FEINBERG: Why not say that there's a presumption of culpability and let the very same people who are going to have to do the presumption -- DR. THOMAS: I think what she's doing is equating wrongs and harms to some extent, in terms of the merit that each of them poses for compensation. DR. FADEN: Could I introduce something here? I'm not sure I understand where Pat is because I don't think you're calling for a case-by-case assessment of evidence of culpability. MS. KING: Right. DR. FADEN: It's rather that let's articulate why it is we're having this presumption in favor of culpability, and the presumption in favor of culpability is because the background historical evidence points to the likelihood that the government standards requiring consent based on adequate disclosure, which we said they had, the AEC claimed they had, and the Nuremberg and Wilson memo says they should have had, doesn't square with what we know were the practices from the people who were doing the work, and the government paid for the work, so the government should have implemented its standards, it doesn't look like it did, so odds are a lot of people out there were enrolled in medical research without -- in practices that didn't follow the rules, and we're only landing on the government. Somebody else can worry about whether anybody else is responsible. We're saying the government is responsible for that. So, we're having a background presumption that it's very likely that a lot of these people were enrolled in their studies based on adequate, what we would consider adequate consent in line with the standards that the government claimed it had at the time. Okay. So, the presumption is that they wouldn't be let's look case-by-case, it's the justification for the situation 2 thing that we've set up already as the rationale for it. Now, I don't know what follows, Pat, from your saying let's loosen or tighten the causal stuff. MS. KING: Well, the causal -- DR. FADEN: But it's still one issue, and I still think that -- MS. KING: I started by saying that a way down the road, I think, where we could go no where, which is that we were going to get closer and closer to sort of strict -- I call strict requirements of showing a connection between what happened to you and some resulting harm with, lawyer's terms, a greater than, likely or by a preponderance of the evidence or whatever. What I'm much more interested in is what gets me down to only being able to show something less than lawyer terms in that preponderance of the evidence, that would pass causal muster. In lawyer terms, I understand it to be what we've done in situation 1 would be the following, and that is, the government screwed up. It helped make it impossible for people to show redress. Government, because you made it impossible for people to show redress, I'm going to relieve those people of causality, period. All you have to do is show that the government made it impossible for you to show anything. When we get to the next case, I'm trying to use the same logic, which says that -- and, so, I'm not a scientist, I'm the policymaker. I'm trying to say that in the committee who reads that presumption is a strong presumption, and you feel comfortable in making a case for it, let's try to do the same thing in this next category of cases, make the weight be carried on the culpability side of it, rather than on the side of requiring people to show -- even for getting into a category, this causal cause and effect. For policy reasons, one can waive causation. You just did it. What I'm saying here is like waive it a little bit. I don't quite know how to articulate it. DR. FADEN: Well, one way to do it -- look, I think I hear what you're saying, but we -- this committee could never work out the details of the causal stuff. MS. KING: Right. DR. FADEN: There is no way. If we had maybe another year, we could spend the whole year on this piece of it, but maybe we can take some of this discussion and try to craft better language for the guidance we want to give to whatever kind of group that follows. There's no way that this group is going to be able to nail that part down. I just don't see it, and I realize that maybe that's my way of saying let's punt the headache to another group, but I think it's a little bit better than that, if we can provide some guidance that picks up on this sort of theme that Pat's introduced. I see Dan, and Ruth, and then I do want to point out that we've already -- we went a half hour more than we should have, according to the schedule. So, maybe we should end with -- DR. KATZ: Do we need to provide guidance for another group? Because it's an important question. We may have to. But again you're postponing any -- you're talking about remedies now. You're postponing remedies for another three-four-five years. DR. FADEN: Well, I meant this particular -- maybe not. Maybe just -- DR. KATZ: Well, I don't know which -- yeah. Well, I don't know the -- DR. FADEN: I don't know. I mean you're right. That is a dire -- you can also say that the recommendations be that within X period of time, this -- we got a year. Somebody else could get -- could give somebody else six months and say think this one up, and then -- the bottom line is we don't -- we don't have the authority to make any of this happen, is the reality of it. I mean let's be frank about this. We have only the authority to recommend the power of our arguments, and any political pressure that may be brought to bear based on the interest generated in the public and in advocacy groups, but we aren't in a position to make any of this happen. So, we should all remember that, you know, and I -- you know, we hope that what we say will have sway, and we will be implemented, but nobody has to do anything based on anything that we recommend, which is, you know, talk about laboring for 12 months and giving birth to a squeak, that would be the ultimate one. We might have the most wonderful recommendations in the world, but if nobody does anything with them, -- MR. FEINBERG: Let me just suggest that I really do believe that we mustn't lose sight of the fact that of much more practical significance than the debate today is the debate over prospective remedies. DR. FADEN: That's tomorrow. MR. FEINBERG: The prospective steps to guide researchers in the future. That really is on the scale of things, I think, of critical practical significance. DR. ROYAL: But I would hope that people who feel that they've been wronged would regard that as appropriate compensation. DR. FADEN: That is the force of number 2. The three big recommendations, 1 is tell the story, the next is apology, and the third is the sort of learn what you can so you don't do it again. So, my answer, for example, to Pat's hypothetical is if we had people who had been used without consent, but not in any way harmed, the major thing we say to them is we're horribly sorry, and we're going to do everything we possibly can so that that never happens to anybody else again, including next time making sure that the connections are real clear between if you use a subject without their permission, you're going to get bad, you know, bad things will happen or if the government does it again, really awful -- heads will roll and stuff, but I would agree. Ruth, and Dan, and then we're going to stop. DR. MACKLIN: I only wanted to say that I got very confused here at the very end, and that's because since I bought into Pat's -- I mean I find what she's pushing and arguing very persuasive, both in the search for a justification and to try to rectify the balance here in the presumptions, that is, -- well, I won't say more. I'm not clear when Duncan said -- this is why I'm confused, responded to Pat, and Pat said something about Duncan talked about population. You could talk a little bit -- a weaker -- weaker than causation. Something weaker than causation. I tried badly earlier to suggest something that would be intermediate by saying what about a possibility that it was caused by it rather than a probability, and Duncan said no, no, no, it's not any easier to show that. Now, how is -- yeah. All I'm asking now is where are we left? Can we go down the path that Pat is suggesting by trying something weaker than the probability of causation, and is that practical, or is there no place to go? DR. FADEN: Go ahead, Dan. MR. GUTTMAN: This is my take-home, because we've been thinking about this quite a bit. Gary and others have spent a lot of time with the atomic vets folks and all these, because this is not new stuff, as Ken and everybody knows. The question, I guess, for Duncan and Ken and Henry and anybody else as the take-home lesson, assuming you want to do what Pat did, by and large, in all these areas, we're not talking about the good fortunate, Jay's term, it's terrible, but it's great, right? But asbestos and mesothelioma, where you know that if you got mesothelioma, it's asbestos, and all these cases, we're not talking about any -- DR. GLATSTEIN: It's not that clear-cut. MR. GUTTMAN: Right. In all these -- well, okay. Well, okay. What can I tell you? But I mean in none of these cases, in none of these cases, anybody's saying -- it's like a 50 percent -- it's attenuated, I think, in all these cases. So, the question that I guess -- here -- we see it, speaking for the staff that has thought about this. There are three ways policy-wise in dealing with this. One is there's some folks out there, the atomic vets, for example, who say, look, there is this whole boundary, a category of diseases, that hasn't been recognized, auto-immune disease, I don't know what auto-immune diseases are, but in other words, that get out of the cancer business. So, one way of going is saying there's a whole -- you know, well, obviously if it's a stopping point, if you come down and get pneumonia, I don't know if that's -- so, one is can you push into a new category? That's one. Two is the dose business, right? You can say we don't care if it was just the smallest micro-microcurie, right, as long as you're anywhere near Strontium, right? That's another direction. And even so, the existing statutes sort of have that in there. So, it's not quite, you know, as simple, and the third, which was suggested to us by one vigorous advocate who's come and see Gary and I on many occasions, is, look, where you got a situation like the vets, turn the presumption around. Let these God damn scientists, pardon the expression, have them disprove the connection to cancer, you know. Let the scientists, put the burden on them. If they can disprove that pneumonia is ever caused by cancer, take it out of there. So, my question for the take-home lesson in terms of the causality is are there any alternatives other than hypothesizing some, you know, breakthrough set of categories, just eliminate -- when you're thinking it through, what are the other ways that you can bust the causality? Ken, is that -- DR. GLATSTEIN: You are missing something, however. We've got two kinds of problems here. Once again, you've got the man on the street who's exposed without consent, you have a patient with a very specific diagnosis in many instances, many times a malignant diagnosis who was exposed to radiation. Dr. Saenger did not give those patients cancer. I was prepared to feel the same way about the plutonium until that -- until the fact emerged that many of the plutonium recipients did not have malignant diagnosis. That changes my thinking a lot about that problem. DR. FADEN: Moreover, even if they did, Eli, nobody at the time thought that it was going to help them. DR. GLATSTEIN: Absolutely. The issue is whether the patient -- a patient stands to go -- stands to get exposure or benefit of one type or another, and the man on the street, the intentional release victim, a down-winder, the atomic vets, they were not going to get any benefit out of this. This is crazy. MR. GUTTMAN: But what the question -- DR. GLATSTEIN: It's apples and oranges. MR. GUTTMAN: What is the hurt to which you address? DR. FADEN: Wait a second. You know what, guys. DR. GLATSTEIN: Potential risk for problems, including malignancy. DR. FADEN: Can we do this? We'll do the -- I don't know when, but we will do more of this, but it is 5:00, and I am concerned, and I don't know what to do. I mean do we want to all agree to stay for another hour or -- MS. KING: No. We're all ready to go. We haven't told you yet, but we're all ready to go. DR. FADEN: I have a sense that if the discussion continues, it will not be as productive as it has been. So, I think we should stop, and we will pick up again tomorrow, and we begin at 8 a.m., and we have -- wait a second, wait a second. Don't leave before you get this. This is the subject interview report. It shows you -- Jay asked about the schedule for tomorrow. The problem is -- do we know if there's any flexibility in when Jeremy and Sara could make their presentations? I mean the issue is whether we should pick up in the morning where we left off or do want to take a psychological break and do -- I mean right now, we're scheduled to switch heads tomorrow. (Discussion off the record.) DR. FADEN: Excuse me. Could I get -- could I get one sense from the group? Would we prefer to continue with this discussion first thing in the morning, which means changing the agenda, and pushing off the discussion of the Current Findings and the Preliminary Findings from the Contemporary Studies? MS. KING: I don't think it matters. DR. FADEN: Doesn't matter? Okay. We're going to continue this discussion tomorrow. We're going to do it anyway. The only issue is, is there any psychological benefit -- MS. KING: There's a lot of hours in between. DR. FADEN: Okay. Good. All right. So, it doesn't matter. So, we'll probably stick to the agenda. (Whereupon, at 5:10 p.m., the meeting was adjourned, to reconvene tomorrow morning, Friday, March 17th, 1995, at 8:00 a.m.)