ADVISORY COMMITTEE ON HUMAN RADIATION EXPERIMENTS - - - PUBLIC MEETING - - - MONDAY, NOVEMBER 21, 1994 - - - The Advisory Committee met in the Empire Ballroom, West Coast Ridpath Hotel at W. 515 Sprague Avenue, Spokane, Washington, at 9:00 a.m., REED TUCKSON, Chair, presiding. PRESENT: REED V. TUCKSON, M.D. SUSAN E. LEDERER, Ph.D. HENRY D. ROYAL, M.D. DUNCAN C. THOMAS, Ph.D. ALSO PRESENT: STEPHEN KLAIDMAN NEAL R. GROSS & CO., INC. (202) 234-4433 I-N-D-E-X Page Call to Order 3 Jerry Garcia Welcome and Introduction 3 Dr. Reed Tuckson, Chair Staff Introductions 12 Public Comment Period 16 Afternoon Session 188 -- oOo -- . NEAL R. GROSS & CO., INC. (202) 234-4433 1 P-R-O-C-E-E-D-I-N-G-S 2 Time: 9:15 a.m. 3 CHAIRMAN TUCKSON: Good morning. My 4 name is Reed Tuckson and -- 5 (Discussion off the record.) 6 CHAIRMAN TUCKSON: -- and I have to 7 introduce the designated federal official to 8 formally and officially, into law, open this 9 meeting, Jerry Garcia. 10 MR. GARCIA: As a designated federal 11 employee, I hereby call this meeting to order. 12 CHAIRMAN TUCKSON: Thank you. With all 13 the appropriate pomp and circumstance. 14 It is a very real pleasure for me, as 15 the Chairperson of the Special President's Advisory 16 Committee on Human Radiation Experiments, to welcome 17 you this morning, to tell you on behalf of all of 18 our committee how absolutely thankful and 19 appreciative we are that so many of you have chosen 20 to take time out of your lives to be with us and to 21 share with us your experiences, your observations 22 and your suggestions regarding the matters that are 23 under the purview of this committee. 24 Let me just quickly and briefly remind 25 you of who we are. This Advisory Committee on Human NEAL R. GROSS & CO., INC. (202) 234-4433 1 Radiation Experiments was created by President 2 Clinton in April of this year, April of 1994, to 3 advise the Human Radiation Interagency Working Group 4 on the ethical and scientific criteria applicable to 5 human radiation experiments carried out or sponsored 6 by the United States government. 7 Our committee is composed of 14 people, 8 including a citizen representative and 13 experts in 9 fields as diverse as bioethics, radiation oncology 10 and biology, the history of science and the history 11 of medicine, epidemiology, nuclear medicine, public 12 health and law. 13 I mentioned that our charge is to advise 14 the Human Radiation Interagency Committee. That's a 15 lot of words. Let me tell you who they are. The 16 Human Radiation Interagency Working Group includes 17 the secretary of the Departments of Energy, Defense, 18 Health and Human Services, Veterans Affairs; it 19 includes the Attorney General, the Administrator of 20 the National Aeronautics and Space Administration, 21 the Director of the Central Intelligence Agency and 22 the Director of the Office of Management and Budget. 23 Our committee is intended to provide to 24 the Interagency Working Group advice and 25 recommendations, advice and recommendations, on the NEAL R. GROSS & CO., INC. (202) 234-4433 1 ethical and scientific standards applicable to human 2 radiation experiments carried out or sponsored, as I 3 said, by the United States government. 4 The words "human radiation experiments" 5 in our charter refers specifically to two things. 6 First, experiments on individuals involving 7 intentional exposure to ionizing radiation. This 8 category does not include common and routine 9 clinical practices, such as established diagnoses 10 and treatment methods involving incidental exposure 11 to ionizing radiation; and, number two, we are 12 charged to explore experiments involving intentional 13 environmental releases of radiation that were either 14 designed to test human health effects of ionizing 15 radiation or were designed to test the extent of 16 human exposure to ionizing radiation. 17 We are given a charge to look at some 18 issues in specifics and others as they become 19 discoverable through our process of exploration. 20 Specifically, we are to look at the experiment into 21 the atmospheric diffusion of radioactive gases in 22 tests of detectability, commonly referred to as the 23 Green Run tests. 24 We are to look at two radiation warfare 25 field experiments conducted at Oak Ridge in 1948 NEAL R. GROSS & CO., INC. (202) 234-4433 1 involving gamma radiation. We're to look at six 2 tests conducted during 1949 to 1952 of radiation 3 warfare ballistic dispersal devices in the Army's 4 Dugway, Utah, site. 5 We are to look at four atmospheric 6 radiation testing -- tracking tests in 1950 at Los 7 Alamos, New Mexico; and then any other similar 8 experiments which may be later identified through 9 the course of our work. 10 Our committee's approach has been to 11 seek to answer several fundamental questions, and I 12 would list these four questions for you now. First, 13 "What ethics criteria should be used to evaluate 14 human radiation experiments?" This is a major issue 15 for this committee, and we learn a great deal from 16 listening to people like you and it helps us a great 17 deal. 18 No. 2, "What was the federal 19 government's role in human radiation experiments?" 20 No. 3, "What are the criteria for 21 determining appropriate federal responses where 22 wrongs or harms have occurred?" 23 No. 4, "What lessons learned from 24 studying past and present research standards and 25 practices should be applied to the future?" NEAL R. GROSS & CO., INC. (202) 234-4433 1 Well, as we have gone about our work -- 2 We've been in business since April. This is a 3 little bit now maybe a couple of weeks past our 4 halfway point. We are to report again to the 5 President and the Interagency Working Group 6 tentatively scheduled in April, at the end of our 7 one year. 8 We have released an interim report, 9 which is available to you. The full copy, the book 10 itself, is available. I think we've run out of 11 copies today, but there will be some being shipped 12 in that may get here later today. If not, it is 13 very easy for you to get a copy of this report. 14 We'll take your name or they'll give you the address 15 and it will come back to you in the mail in rapid 16 order. 17 In the meantime, there is a very concise 18 but very useful executive summary, that is on the 19 back table, of that interim report which will give 20 you certainly a great deal of information about 21 where we are in our work. 22 The point that we would like to 23 emphasize is that we are still early on in our work. 24 We have not reached conclusions. We are not 25 prepared today to give you definitive conclusions on NEAL R. GROSS & CO., INC. (202) 234-4433 1 our work. We are listening and -- carefully, and we 2 are working hard. 3 A major aspect of what we do is to 4 listen to the American people, and in particular 5 those who have either firsthand or family experience 6 with the matters under our scope of review. We have 7 always included public testimony in all of our 8 activities. Every meeting of our committee is done 9 in public. There are no secret or behind-door, 10 closed-door meetings. Everything we do is 11 reportable and open to the American people. That is 12 a fundamental principle by which we work. 13 At each of our meetings, there has been 14 time for public comment, and we have benefited 15 greatly from that public comment, but we have felt 16 that just having meetings in Washington, D.C. and 17 inviting the public to attend is not good enough. 18 So we have been taking our committee, or portions of 19 our committee, to various geographical sites, and in 20 fact choosing those sites with some sensitivity to 21 where our major concerns might be and where we know 22 there are people who have concerns. 23 So we've been in San Francisco and have 24 had extensive public comment. Recently, several of 25 us returned from a visit in Cincinnati where we had NEAL R. GROSS & CO., INC. (202) 234-4433 1 an extremely productive day of hearings, very 2 similar to today's hearings; and we also were 3 benefited by our Cincinnati meetings and others by 4 the participation of advocacy organizations, who 5 have been very helpful in bringing people who have a 6 story to tell to our attention and vice versa. 7 We are here today, we will be in the 8 Santa Fe/Albuquerque community in the next few 9 weeks, and we also will be in Nashville, Tennessee, 10 also, in about another month or so, again taking our 11 work out to various sites in this country. 12 Before I then wrap up my introduction 13 and introduce my colleagues that are with me today, 14 a quick word on the format today. We are very 15 dedicated to doing this job and doing it well. We 16 have suspended our personal work to be here. We 17 will stay here as long as we need to, up until the 18 very last instant of getting on this airplane that 19 we have to -- well, actually, we don't have to take 20 an airplane tonight, most of us, so we will actually 21 be here. 22 We want to give you the time you need is 23 the point I'm making. To be fair to everyone, we 24 wanted to have some rules by which we will conduct 25 these meetings. We want to give you each 7 minutes. NEAL R. GROSS & CO., INC. (202) 234-4433 1 Seven minutes, we've found, is a reasonable period 2 to get your points out. You can make a decision -- 3 And the reason why I'm giving these ground rules now 4 is, as my colleagues will prepare to introduce 5 themselves, I want you, if you have not thought 6 about how you want to use your 7 minutes, I want you 7 to think about it now. 8 You can either use the full 7 minutes to 9 talk to us and give us what you want, or you can 10 break your time up; and I will indicate to you at 11 4 minutes of testimony by turning my sign sideways. 12 You will know that you have hit four minutes, giving 13 3 minutes left for questioning by the committee. 14 We find it best if we do have time to 15 ask you questions, but you may be so passionate 16 about getting this material to us that you have to 17 give, that you want to use every one of those 18 7 minutes and you're doggone going to use it. And 19 that's fine with us if that's what you want to do, 20 because you're the star of this performance, not us. 21 So that's important. 22 Number two, most times, or many times, 23 there are points that you will raise that cannot 24 possibly be explored in a 7-minute block of time. 25 We don't want to see your information fall off the NEAL R. GROSS & CO., INC. (202) 234-4433 1 edge of the earth, and so there are staff members 2 who are here who are brilliant, bright, smart 3 people. They are extremely knowledgeable in this 4 field. They are meticulous in their attention to 5 detail. Where are my -- 6 Would you please raise your hands now? 7 Now, turn around, audience. You see 8 some are in the back and some are in the front. 9 Thank you. 10 Now, these folks will be here with us 11 the whole time. I will be asking you to connect 12 with them after you have made your statements 13 because when -- when follow-up is indicated, and 14 they will absolutely follow up and continue an 15 ongoing relationship with this committee. So that 16 is a very important link that I do not want to 17 underemphasize. 18 With those ground rules, let me turn to 19 my right and ask Henry Royal if he will start the 20 process, and then we'll go down this way. 21 Stephen, I'll get to you later. 22 But, Henry, we'll go that way, 23 introducing who we are and a little bit about our 24 background. 25 By the way, I guess I'm supposed to NEAL R. GROSS & CO., INC. (202) 234-4433 1 mention that -- I'm so unthoughtful -- my name is 2 Reed Tuckson. I am the President of the Charles 3 Drew University of Medicine and Science located in 4 south central Los Angeles, California. My 5 background is I'm an internist, a physician. I am a 6 public health person. I have served many years as a 7 public health official. I've just finished a 4-year 8 term on the Board of the American Public Health 9 Association, and so my interests are generally in 10 those areas. 11 Henry? 12 MR. ROYAL: My name is Henry Royal. I'm 13 also a physician. This is my first trip to Spokane. 14 You would have been able to tell that last night if 15 you saw me leaving for the airport at the last 16 minute, 'cause I was trying to decide whether I 17 should bring my tennis racket or my overcoat. 18 Fortunately, I grabbed my overcoat. 19 I'm also an internist and nuclear 20 medicine physician. My two major interests are 21 radiation effects and, also, health care. That is, 22 how we can get the most amount of health spending 23 our limited resources wisely. 24 CHAIRMAN TUCKSON: Thank you, Henry. 25 MS. LEDERER: My name is Susan Lederer. NEAL R. GROSS & CO., INC. (202) 234-4433 1 I'm an Associate Professor of Humanities at Penn 2 State University College of Medicine. My training, 3 I'm a historian of medicine, American medicine in 4 particular; and my special area of interest is the 5 history of human experimentation, particularly in 6 20th century America. 7 MR. THOMAS: My name is Duncan Thomas. 8 I'm a professor at the University of Southern 9 California School of Medicine, the Department of 10 Preventative Medicine. I represent the field of 11 epidemiology. Actually, I'm one of these fake 12 doctors with a Ph.D. rather than -- so I'm sort of a 13 non-medical epidemiologist. 14 One of my major research interests over 15 the course of my career has been radiation health 16 effects. I was one of the principal investigators 17 of the studies of leukemia and thyroid disease in 18 people downwind of the Nevada test site, and I've 19 also served as a consultant to CDC on a Hanford 20 thyroid disease study. 21 A number of other interests are in the 22 area of effects of radium on the uranium miners 23 versus diagnostic x-rays. I was a member of the 24 National Academy of Sciences BIER V Committee. So 25 my background is generally in the area of NEAL R. GROSS & CO., INC. (202) 234-4433 1 epidemiology and biological effects. 2 CHAIRMAN TUCKSON: Now, we are a 3 subsegment of, again, a committee of 14. The other 4 members of our committee will be very well briefed 5 on everything that comes from this hearing. We have 6 this very fine person here who is transcribing every 7 single word that we say. These transcripts in fact 8 are made completely and totally available to every 9 member of the committee, so that -- and then of 10 course we will do our own, as a subcommittee, 11 briefing to the rest of our 14. 12 The people that are on this commission, 13 again, are people from all over this country. We 14 didn't know each other when we came together, but we 15 are working to shape together our thinking on these 16 very important matters. We have not reached 17 conclusions. We are still listening and that is 18 important. 19 Steve Klaidman, would you please 20 introduce yourself? 21 MR. KLAIDMAN: Yes. I'm Steve Klaidman. 22 I'm a counselor and Director of Communications for 23 the committee, and I'm a former journalist at the 24 New York Times, the Washington Post and the 25 International Herald Tribune, and I'm a fellow of NEAL R. GROSS & CO., INC. (202) 234-4433 1 the Kennedy Institute of Ethics at Georgetown 2 University. 3 CHAIRMAN TUCKSON: Now, we're ready to 4 begin. Let me say this to you. Our experience in 5 doing these hearings has been a profound 6 appreciation for the hurt and pain that much of the 7 issues that are under discussion have caused in many 8 Americans' lives. We have met many people who have 9 very emotional and have very difficult experiences 10 to relate, and we are very sensitive to that. 11 We seek to create an environment here 12 that is a very trusting and a very supportive one. 13 So, again, as you prepare to speak with us, know 14 well that we are people who really do care about 15 what you have to say to us and that we embrace you 16 today as people who are extremely important and 17 whose each individual stories or family stories are 18 important to us; and I absolutely pledge to you that 19 we will keep faith with your trust in us as a 20 committee. We will do our work the absolute best 21 that we can do. 22 With that, let me ask our first 23 presenter -- By the way, Leonard, I absolutely 24 apologize for what I'm going to do to your last 25 name, but you're going to fix it for me. NEAL R. GROSS & CO., INC. (202) 234-4433 1 Mr. Leonard Schroeter from Seattle, 2 Washington. Welcome aboard. 3 MR. LEONARD SCHROETER: Very good. I 4 have two documents that I will file with the 5 committee at the conclusion of my remarks. One is 6 my curriculum vitae and the other is a rough draft 7 of a paper on human radiation experimentation that 8 is designed for multiple purposes, mostly to educate 9 attorneys and other people concerned with these 10 issues. 11 I also have brought with me the usual 12 small number of notes that accompanies something of 13 this kind, and I got all of this from you, and now I 14 have six and three-quarters minutes to do something 15 with it. That's a little hard, but I'm going to do 16 the best I can in that short a period of time. 17 I think that the starting point is to 18 introduce one's self, but very, very briefly, not 19 extensively. I'm a lawyer. I live in Seattle. I 20 am Of Counsel, which really means retired, to a law 21 firm, Schroeter, Goldmark & Bender, from which I -- 22 where I've no longer practiced for the last five 23 years. 24 But, really, what I'm here about is I am 25 a witness and an advocate for the one most NEAL R. GROSS & CO., INC. (202) 234-4433 1 underlying and fundamental thing that I believe this 2 committee and this inquiry needs to be about, which 3 is human rights. I take from what the Chair said 4 with respect to ethical standards that those ethical 5 standards inevitably, both in law, in ethics and in 6 the history of human thought, necessarily involve 7 human rights. So that is the beginning point and, 8 as far as I'm concerned, the end point in terms of 9 any conclusions that are reached. 10 I'm 70 years old. For 50 years, I've 11 been involved in one way or another in human rights 12 issues, beginning as a soldier in World War II and a 13 newspaperman for the Army newspaper, Stars & 14 Stripes, when I was credited to cover the Nuremberg 15 wartime trials. I've been obsessed with Nuremberg 16 and its implications ever since. 17 I have been involved in virtually all 18 the important civil rights movements of our time. 19 My first job -- I'm a graduate of the University of 20 Chicago with graduate degrees in International 21 Relations at Harvard Law School. 22 My first job out at Harvard was working 23 for Thurgood Marshall, who hired me to help prepare 24 the school segregation cases. If I never did 25 anything else in my life, that would have justified NEAL R. GROSS & CO., INC. (202) 234-4433 1 it, just working on this significantly important 2 crisis of conscience in American life. I know of no 3 other crisis of conscience other than that that is 4 as great as the one we are dealing with here. 5 So my job I see as being to accentuate 6 for you what that crisis of conscience is and means. 7 Now, I've had much experience relating to that. 8 Some of it is detailed in my curriculum vitae, but I 9 can assure you this (displaying document) is the 10 product of 50 years of thinking about, agonizing 11 about these kinds of issues. 12 Let me proceed from that point of view. 13 I believe that it is an absolutely established fact 14 beyond any question that human rights 15 experimentation is a crime against humanity. I use 16 that term not in its pejorative or epithetical 17 facts, but as a matter of a juridical, 18 jurisprudential designation of the most heinous 19 types of crimes that governments and individuals 20 acting for governments may do. 21 I need go no farther than the Nuremberg 22 Code itself. I have deliberately attached it to the 23 back of my paper, the Nuremberg Code. I will not 24 reread it. It is brief, succinct and to the point 25 and makes absolutely clear in its very first NEAL R. GROSS & CO., INC. (202) 234-4433 1 sentence that the voluntary consent of the human 2 subject is absolutely essential. It is the most 3 critical right that people have to control their own 4 bodies and their own autonomy. 5 And, tragically, that is most often, 6 most often violated by those with the most power in 7 our society; governments, medicine, science, those 8 people who should be most responsible and are often 9 least accountable. 10 Now, that was the horror that the 11 Nuremberg Code sought to address. That was the 12 subject matter of the doctors' cases which were a 13 part of the Nuremberg trials. And since Nuremberg, 14 it is unquestionably the case, both because United 15 States prosecutors were the principal persons 16 bringing this message to the world, but also because 17 the security council in 1947 made it an essential 18 part of the international law of our society, and 19 because as a consequence of the Genocide Convention 20 and a number of other treaties, it has been 21 incorporated as a part of American law and American 22 ethics. 23 I need not remind those of you who are 24 physicians that the world health organizations, on 25 two critical occasions, adopted this as central and NEAL R. GROSS & CO., INC. (202) 234-4433 1 the most central ethical consideration for health 2 care providers and scientists. And I suggest to you 3 that -- I don't suggest, I state to you that the 4 Constitution of the United States in Article 6 5 incorporates into the laws of this country the 6 treaties to which we are necessarily adherent. 7 So we are talking here about the most 8 fundamental kind of human rights. I give you that 9 as a given, a nonarguable principle which must 10 dominate your thinking from the beginning. 11 There are things that necessarily flow 12 from that, many things; but among the things that 13 flow from it is an understanding of, and that 14 addresses the second question that the Chair 15 addressed, "What was the federal government's role 16 in all of this?" 17 The federal government's role, I 18 suggest, was systemic, sustained and targeted. 19 Those were the criteria that the international 20 tribunal attached to the function of crimes against 21 humanity, and I charge here that the United States 22 government perpetrated crimes against humanity over 23 a substantial period of time, indeed almost three 24 times the length of time that the Germans did, who 25 were in the dock at Nuremberg. NEAL R. GROSS & CO., INC. (202) 234-4433 1 Now, this happened. This is a fact, and 2 this is before this tribunal -- or this advisory 3 committee. I wish perhaps you were a tribunal, but 4 you are an advisory committee. So that fact is 5 before us. 6 CHAIRMAN TUCKSON: Mr. Schroeter, I'm 7 going to need you to close out. If you want to just 8 go ahead and just take a few seconds to give us just 9 the last point. Your 7 minutes unfortunately is up. 10 MR. LEONARD SCHROETER: Oh, God. All 11 right. Well -- 12 MR. TOM BAILIE: Leonard, I can give you 13 7 minutes of one of our people that didn't show up. 14 Would that be all right, Mr. Chairman? 15 One of our people didn't show up because of bad 16 roads, Mrs. Perks. Could I give him her 7 minutes? 17 She called and said that -- she expressed her sorrow 18 about not coming. 19 CHAIRMAN TUCKSON: Why not? That's 20 fine. If that's what you would like to do and he 21 would like to do that -- 22 (Applause from audience.) 23 MR. TOM BAILIE: This is a very 24 important message. I apologize for interrupting. 25 CHAIRMAN TUCKSON: -- then why don't we NEAL R. GROSS & CO., INC. (202) 234-4433 1 just start that clock again and you can go right at 2 it again. 3 MR. LEONARD SCHROETER: Thank you. 4 The other part of it, which is not a 5 part of the international law that's involved but is 6 a part of the ethics of government and I think of 7 the criminal law of this country, is the secrecy, 8 the covertness and the plain, simple deceitful 9 dishonesty of this government towards its citizens. 10 You place much emphasis in your writings 11 -- I have read your excellent interim report with 12 great care -- you place much emphasis upon the 13 secrecy of what happens, and you stress the openness 14 of this group. Openness is needed to cleanse the 15 soul and conscience of America, and the secrecy is 16 not simply ethically and morally wrong and callous 17 and cruel and evil, it is also criminal. I can't 18 tell you how many criminal statutes were violated by 19 the United States government, some of the 20 researchers and some of the physicians, during this 21 period of time when these illegal, immoral crimes 22 against humanity were occurring. 23 Your job is to not only call attention 24 to that, but to suggest appropriate responses to it. 25 So under these circumstances, and given the mandate NEAL R. GROSS & CO., INC. (202) 234-4433 1 of this committee, which includes not only the 2 biological experimentations, which are tragic enough 3 and individualized enough, but also the much broader 4 experimentations, such as the Green Run and the 5 releases and so forth, which, over time and people, 6 go from what this committee began in terms of 7 thinking, or at least the secretary did, as maybe 8 800 people were involved, but by my calculations, 9 there are well over one million individuals, because 10 of the territories and the people affected by 11 releases, well over one million people, maybe 12 2 million -- I don't know -- who are human guinea 13 pigs. 14 Now, that is a crime of such human 15 massive proportion that to give you a mere one year 16 to unearth and expose it, let alone to suggest 17 appropriate remedies, seems to me to be a serious 18 misjudgment of the weight and importance to this 19 nation of the task that you have been given. It is 20 enormous in terms of people who have been affected. 21 And if you see a small number of people in this 22 room, in part it's because so many are dead and 23 cannot be here. We're talking about crimes that 24 killed, and people cannot be here to bear witness, 25 so we have to bear witness for them. NEAL R. GROSS & CO., INC. (202) 234-4433 1 Now, that's my basic statement, and I 2 want to talk for a quick minute, or maybe two -- 3 don't quote me -- but a quick minute as to things I 4 think need to be done, and these necessarily are 5 going to be in much broader generalizations than I 6 like to use because I like to be much more precise, 7 but I'm going to have to talk in sound bites, so I 8 will use some sound bites. 9 The first thing that I think you 10 absolutely must do and recommend to the President of 11 the United States is to admit criminality, not error 12 but criminality, and to commit to no further crimes 13 against humanity. 14 Secondly, I think what you ought to do 15 is to powerfully suggest that we must attempt to 16 cease the rationalizations of what has been done. 17 The rationalizations of national security or 18 national whatever is the rationalization of all 19 tyrannies; and the embarrassment that we didn't know 20 or that we don't think we knew or we didn't really 21 understand is what any good lawyer for the defense 22 always says, but says because he's an advocate and 23 talking out of both sides of his mouth. 24 We knew as a nation and we knew 25 institutionally, we knew from 1945 on about the NEAL R. GROSS & CO., INC. (202) 234-4433 1 Nuremberg Code, and we had protocols in place in the 2 government by the late forties and certainly by 1953 3 and ever thereafter; and if we didn't know, it was 4 because people in high places hid, obscured or lied, 5 but we knew institutionally and we've got to stop 6 rationalizing for reasons of state. That's what all 7 tyrannies do. 8 We have to stop the dosage low-level/ 9 cost benefit rationalization game because that isn't 10 the issue at all and can never be the issue in a 11 situation such as the lack of informed consent, the 12 taking away of human autonomy. There may be some 13 scientific arguments, most of which I think are not 14 very well supported, but they are not the business 15 of this group, and that kind of argument demeans the 16 victims and the guinea pigs who are here. 17 We have to provide victims and their 18 families with a certain unequivocal, nongrudging 19 remedy and compensation, not only admitting guilt, 20 but admitting the appropriate consequences of that 21 guilt. We should not add insult to injury by 22 denying access to the justice system to those people 23 who have already been denied access to the humanity 24 that they deserved. 25 Among other things, every person in this NEAL R. GROSS & CO., INC. (202) 234-4433 1 room who has been a witness also is the inheritor of 2 an 800-year-old tradition which says that their 3 rights can be heard before a jury of their peers in 4 a proper forum where they can be heard fully and 5 completely and get a proper remedy for the harm 6 suffered; and we should not be the instrument of 7 taking away another right by giving some kind of 8 inadequate compensation. 9 And, lastly, I have to say that the most 10 important thing that this group can do is help 11 restore confidence in the morality, the truthfulness 12 and the honor of the government of the United States 13 where we all live and for whom we all care. 14 CHAIRMAN TUCKSON: Right on the money. 15 Thank you. Mr. Schroeter, let me just thank you 16 again for coming before us. Unfortunately, we won't 17 be able -- well, let's go ahead and have one 18 question. 19 MR. THOMAS: I'm sorry. I realize we're 20 already running behind schedule, but there's a 21 question I really wanted to ask you. In your 22 opening remarks, you commented on the Nuremberg Code 23 and the importance of -- the supreme importance of 24 the question on the issue of consent. I wanted to 25 pick your brain a little bit about how you would NEAL R. GROSS & CO., INC. (202) 234-4433 1 apply that principle to the intentional releases 2 that we're also charged with, because Nuremberg, 3 after all, was basically oriented towards the 4 medical experiments. 5 MR. LEONARD SCHROETER: Right. 6 MR. THOMAS: If you'll indulge me for 7 just a minute, I'd like to read into the record a 8 little short piece out of one of the staff memoranda 9 that we shared at our last advisory committee 10 meeting and get you to tell me a little bit about 11 what your take on this question is. 12 MR. LEONARD SCHROETER: All right, sir. 13 MR. THOMAS: It's not very long. This 14 is on the issue of consent. It says, "If the 15 government required individual consents from every 16 individual possibly affected by an intentional 17 release, intentional releases would be impossible. 18 Invariably, someone would refuse." 19 (Clarification requested by reporter.) 20 MR. THOMAS: "Thus, if intentional 21 releases are --" 22 MR. WENDALL OGG: Please repeat the 23 whole thing. He didn't hear the whole thing. 24 UNIDENTIFIED SPEAKER: A little louder, 25 please. NEAL R. GROSS & CO., INC. (202) 234-4433 1 MR. THOMAS: "Thus, if intentional 2 releases are ever permissible, we must rely on less 3 restrictive standards for authorization than 4 individual consent. The most likely standard would 5 be some sort of consent of the government obtained 6 through democratic and fair procedures," and then 7 the memorandum goes on to talk about the 8 difficulties with implementing this policy. 9 So I guess my question to you is: Would 10 you come down in an absolute sense saying that there 11 should never ever be any form of release into the 12 environment, or how would you go about reconciling 13 this difficulty? How would you apply the principle 14 as stated? 15 MR. LEONARD SCHROETER: I might, as a -- 16 as my own moral and ethical principle say that I do 17 not believe that civilized society should ever do 18 this, but that's not my answer. I think I have a 19 clearer answer. The clearer answer is that as to 20 certain forms of governmental conduct, we resolve 21 how that conduct should occur by the participation 22 in the representative democracy process, and the 23 Constitution recognizes that. 24 But the Constitution modifies that and 25 it modifies that in very important ways. It NEAL R. GROSS & CO., INC. (202) 234-4433 1 modifies it by a Bill of Rights, a Bill of Rights 2 which insures the individual rights of individual 3 people as against the acts of government, even if 4 those individuals are in a very small minority 5 indeed. I do not think that by plebiscite or by act 6 of Congress this government or, by my standards, any 7 government can make a determination that it will put 8 at physical risk a minority of its citizens or kill 9 them. 10 So at the least, there must be the 11 informed consent of the individuals who happen to be 12 in that range of activity. If there is any 13 meaningful risk of harm, any, you have to get 14 consent, and I think that's part of the bodily 15 autonomy principles that are innate in the right of 16 privacy and which are protected constitutionally. 17 MR. THOMAS: Okay. Thanks. 18 CHAIRMAN TUCKSON: Thank you very much. 19 (Applause from audience.) 20 CHAIRMAN TUCKSON: Thank you, sir. Be 21 well assured that your very meticulously-researched 22 document will be read. 23 MR. LEONARD SCHROETER: I said it's a 24 draft and it is, and I'm going to -- I have to clean 25 it up, but I give it to you now and I'll give you NEAL R. GROSS & CO., INC. (202) 234-4433 1 the cleaned-up one. 2 CHAIRMAN TUCKSON: As Mrs. Hanson comes 3 forward, let me ask -- Kristin, let me make sure, 4 Kristin -- that people see Kristin. If you are not 5 on the list yet -- first of all, if you are on the 6 list to talk with us and you haven't yet checked in 7 with Kristin, do so at your earliest convenience so 8 she'll know you're here. 9 Secondly, if you are someone who has not 10 been signed up yet, and you were not part of the 11 initial development of this list, know well that 12 it's not that kind of formality. If you've come 13 here and you have something that's important for us 14 to understand, you can get on the list, but we do 15 need to have a sense of how many people that might 16 be. So you ought to go to Kristin right away if 17 you're not already on the list and want to speak 18 with us. 19 Finally, let me just say this about the 20 time issues. Again, we seek to create an 21 environment that is comfortable and friendly and 22 that we can learn the most from. The one thing I 23 don't like being is in the position of a traffic cop 24 and very rigid. That's just not my personality to 25 be rigid. NEAL R. GROSS & CO., INC. (202) 234-4433 1 The only reason I want to kind of try to 2 be a little bit on -- I have to deal with these 3 rules is I need to be fair to you. The person 4 that's scheduled to speak at 4:30 is going to be 5 very angry with me if I use all the time at 10:00 6 and we go way over. Then I'm going to have some 7 very angry 4:30 people who are upset. So it's a 8 matter of just trying to be fair to everyone. 9 We're not interested in being fair to 10 us, we're trying to be fair to you. So we can play 11 with these time limits a little bit here and there. 12 I don't want to be that rigid about it, but I just 13 want the people at the end of the train to know that 14 we are not going to forget about you either 'cause 15 what you have to say is important. 16 Finally, what I think I'm going to do is 17 -- our little stopwatch system didn't make it here, 18 so we don't have our little system of lights -- so 19 what I'll do is, at four minutes, I'll just place my 20 little blue folder up and you'll see -- I hope that 21 you can see that. Can you tell that's a 4? Great. 22 MRS. GERTIE HANSON: No, I can't see 23 anything. 24 CHAIRMAN TUCKSON: Oh, gosh. 25 MRS. GERTIE HANSON: But it's blue. NEAL R. GROSS & CO., INC. (202) 234-4433 1 CHAIRMAN TUCKSON: Well, we have a Magic 2 Marker. All right. 3 MRS. GERTIE HANSON: It's the blue that 4 helps. 5 CHAIRMAN TUCKSON: And then when it's 6 7 minutes, I'll turn that over and it says "Stop;" 7 and within reason, you'll stop and do that. So I'll 8 just do that. That way you folks will kind of know 9 what's going on. 10 Well, we are very, very pleased, 11 Mrs. Gertie Hanson, who directs the Citizens Against 12 Nuclear War -- Nuclear Weapons and Exterminations, 13 I'm glad you came with us, and welcome. 14 MRS. GERTIE HANSON: Thank you. And I 15 don't mind at all if you put your hand up or shout 16 at me. Please feel free to do that and be that 17 traffic cop if that helps. 18 My name is Gertrude J. Carter Goslin 19 Hanson. My home address is W. 2535 Riverview Drive, 20 Coeur d'Alene, Idaho; and I am chairperson of CANWE, 21 Citizens Against Nuclear Weapons and Extermination, 22 an 11-year-old -- 11-1/2-year-old public interest 23 group. Its main purpose is to educate about the 24 production and associated hazardous effects of 25 nuclear weapons. NEAL R. GROSS & CO., INC. (202) 234-4433 1 I also serve as a Resource Center 2 Advisory Board member to the Hanford Health 3 Information Network, which is a Congressionally 4 mandated project. 5 Today, though, I am speaking as one of 6 many who grew up in North Idaho and are Hanford 7 Downwinders. Thanks for giving us this opportunity 8 to be heard and hopefully to share my thoughts that 9 you will bring to the larger committee that has been 10 called into being by President Clinton. I'm going 11 to be speaking in a little larger context than those 12 smaller, but not less important, numbers of citizens 13 who suffered harm on a smaller scale as human 14 subjects for particular radiation experiments. 15 The place I grew up in North Idaho in 16 the 1940's and the 1950's is about 142 miles from 17 the Hanford Nuclear Reservation. In 1980, 18 Mt. St. Helen's, located in the Washington Cascade 19 Mountain Range, blew with a terrific force. That 20 force and the prevailing winds carried the volcanic 21 ash to farms, towns and cities in North Idaho. It 22 also blanketed ash in varying depths along the way. 23 Had there been rain or snow at various places, it 24 would have affected the deposition depths at those 25 points. NEAL R. GROSS & CO., INC. (202) 234-4433 1 The radioactive fallout from Hanford did 2 the same thing many times throughout its history 3 whenever the wind came our direction, including the 4 Green Run; and since we live in a prevailing wind 5 pattern, it happens several times a year. I believe 6 that the technical steering panel of the HEDR 7 Project and discoveries found this to be true, also. 8 Our town depended on the milk, meat and 9 farm products from small farms like ours in the 10 1940's and fifties. Long-distance transportation 11 and refrigeration was not yet in full swing and 12 warmer places like Walla Walla, Washington, and 13 smaller towns like Milton Freewater, Oregon, 14 provided farm produce earlier and later in the 15 growing seasons to towns like ours in the colder 16 areas. 17 Consequently, we probably received 18 radiocontamination not only directly but indirectly. 19 Unlike Mt. St. Helen's ash, our small stable 20 population could not see what was falling on our 21 skins, being inhaled or ingested or going into our 22 stomachs with every drink of milk or water during 23 those periods of releases. 24 We know now of the experimental nature 25 of the Green Run, but we may never know the full NEAL R. GROSS & CO., INC. (202) 234-4433 1 extent of its impact on health effects. There may 2 be things which were done of an experimental nature 3 that we're even not aware of. Only people who might 4 now be dead or suffering from health problems may 5 have been the results of those early releases. 6 I join the many females in my high 7 school who suffer from thyroid dysfunction. That 8 number was high as 52 percent of the families -- of 9 the females who responded from the Class of 1953. A 10 high percentage of them were diagnosed in the 11 1950's. At the time the high school classes of 1951 12 through '54 were entering years of puberty Hanford 13 was releasing a lot of radionuclides into the 14 environment. 15 Twenty-nine percent of the 49 females 16 who responded to an informal survey I did in 1988 17 suffered miscarriages in their early childbearing 18 years. That figure rose even higher in the Class of 19 1953. Cancer rates seemed abnormally high at 20 premature ages. 21 Before I was aware of the Hanford 22 experiments and releases, I began an informal health 23 survey of my high-school mates. I did that because 24 I was concerned about what appeared to me to be 25 premature deaths of people who I knew who had NEAL R. GROSS & CO., INC. (202) 234-4433 1 relatively healthy lifestyles, who ostensibly had 2 grown up in quite a healthy environment in this 3 rural area of Idaho. 4 My first husband grew up in Potlatch, 5 Idaho, which is lumbering town about 60 miles south 6 of where I grew up. During the summers he worked in 7 the woods and was outdoors a great deal. He died as 8 a result of pituitary tumors at age 36, leaving 9 behind three small children and me. 10 When I was a freshman in high school, I 11 seemed to have gotten something like the flu which I 12 just couldn't get over. I got very thin and was 13 very tired. Years later my mother told me that she 14 and my dad just weren't sure that I was going to 15 make it. The year before that, the same year and 16 the following year we lost three kids with leukemia 17 in our small school. I believe those school years 18 were 1949, 1950 and 1951. 19 I continue to be troubled -- I continue 20 to be troubled by continued revelations about 21 radioactivity carried out outside the public view or 22 knowledge. How many lives did Green Run affect? 23 What information did the Atomic Energy Commission, 24 now the DOE, Air Force and Navy gather in weather 25 balloons at Civil Air Patrol shacks about NEAL R. GROSS & CO., INC. (202) 234-4433 1 radioactive releases or experiments carried out 2 along our border? 3 What kinds of things may have happened 4 of experimental nature at the Idaho National 5 Engineering Laboratory, which is in the state of 6 Idaho, that we don't know yet about that harmed 7 citizens? And was the nutrition study carried out 8 when I was in elementary school or junior high done 9 for reasons the public and my parents were never 10 away of? 11 I believe that my schoolmates were 12 negatively impacted by the Green Run and other 13 activities relating to the omissions from Hanford. 14 Thyroid disease, fibromyalgia, multiple sclerosis, a 15 variety of cancers, miscarriages, salivary glands, 16 mucous tissue problems, immune system diseases, 17 allergies and skin problems are all being mentioned 18 by Hanford Downwinders as problems they deal with. 19 In fact, perhaps our government and the 20 citizens of this country should consider that we 21 have been subjected to one large, long-lasting 22 nuclear experiment. With the devastating results to 23 human life and health, the findings should indicate 24 that humankind cannot continue to be sacrificed to 25 the nuclear complex. NEAL R. GROSS & CO., INC. (202) 234-4433 1 Thank you. I'll answer any questions 2 that you I in my remaining probably one minute. 3 CHAIRMAN TUCKSON: Well, you did very 4 well. Let me just take the liberty of asking one 5 quick one. These informal surveys that you've done 6 of your schoolmates, that's to be commended, I mean 7 that kind of involvement. Have you shared that data 8 with local public health officials here, and have 9 they had an opportunity to further explore that with 10 the resources available to them, from an 11 epidemiology point of view? 12 MRS. GERTIE HANSON: Yes, I did share 13 it. I began that in 1986 and -- in '87 and '88, and 14 when that data came back -- I'm not a statistician 15 so it was sort of rough -- I did send it to the 16 State of Idaho officials. At that point I was told 17 that we didn't have an epidemiologist, that the 18 State of Idaho couldn't afford one. So I just sat 19 on that. 20 But that information did go to the TSB, 21 I attended TSB meetings and I have shared that 22 others. The state finally did come around, and so 23 did Washington state and Oregon state, and 24 recognized that, yes, people had been harmed and 25 that at least information about radiation could be NEAL R. GROSS & CO., INC. (202) 234-4433 1 given out to people so that they would know at least 2 what to look for or what has happened in the 3 literature. 4 CHAIRMAN TUCKSON: Any others? 5 MR. ROYAL: One of the things that we're 6 interested in learning is what this committee can do 7 for the people who have been affected by releases. 8 One of the things that has been discussed is the 9 whole openness question, and that's a very clear one 10 to me, that one of the valuable contributions this 11 committee can make is to try and get as many 12 documents out in the open where people can get 13 access to them. Beyond that, I start getting -- I 14 don't have such clear thoughts. 15 Do you have any additional suggestions 16 about what the legacy of this committee should be? 17 MRS. GERTIE HANSON: I think the 18 committee really ought to suggest very strongly that 19 we not continue in this nuclear path worldwide; and 20 if the U.S. has any power at all, we ought to make 21 sure that happens. I think we've got some serious 22 problems with waste and what affect that is going to 23 have on people's health. 24 The U.S. government ought to come clean 25 about what they've done. They ought to say, "Yes, NEAL R. GROSS & CO., INC. (202) 234-4433 1 of course, we did this, and we did it through all 2 these variety of ways," whether it was direct 3 experiments to individuals or through radioactive 4 fallout, and to know from those documents. All the 5 documents, all the documents need to be released so 6 that somebody can look at them carefully. 7 And I think there are people who -- many 8 Americans who have been harmed will not ask for 9 money from the government, but there are many who 10 need that; and I don't know what the system would be 11 to make sure that happened, but there are some 12 people that have lost family members and have whole 13 families that are in really tough shape. So I would 14 say somehow that should be done, and you don't have 15 an easy job. 16 CHAIRMAN TUCKSON: Thank you. Thank you 17 very much, and we know how to find you to follow up. 18 Kristin, by the way, do me a favor. See 19 if you can ask Mr. Frederick Lawson if -- let's move 20 him back to after the break. If you can help me 21 coordinate that, I'd appreciate it. 22 Mr. Al Conklin, Department of Health, 23 State of Washington. Welcome. 24 MR. AL CONKLIN: My name is Al Conklin. 25 I'm a health physicist and a manager in the Division NEAL R. GROSS & CO., INC. (202) 234-4433 1 of Radiation Protection in the Washington State 2 Department of Health, responsible for a number of -- 3 managing a number of Hanford programs. 4 A member of my staff, Mr. Ed Bricker 5 (phonetic)m and I, did an analysis of the Walla 6 Walla State Penitentiary inmate study that was 7 titled "The Study of Irradiation Effects on the 8 Human Testis, Including Histologic Chromosomal and 9 Hormonal Aspects." The basis of our analysis was a 10 set of documents we received from the University of 11 Washington from Dr. Alvin Paulsen's (phonetic) study 12 and also obtained from state archives from the era 13 of Governor Dan Evans. 14 This project was approved in March of 15 1963 by a Dr. Hanes (phonetic) of the Department of 16 Institutions. It was reapproved in 1966 by the 17 University Hospital Clinical Investigation 18 Committee. It was suspended in 1969 and terminated 19 in 1970. This study was sponsored by the Atomic 20 Energy Commission. In fact, in a 1962 letter to 21 Dr. Paulsen they state, quote, "There would seem to 22 be no objection to the type of work you described," 23 unquote. 24 The AEC approved their sponsorship in 25 June of '63, forming an advisory committee since the NEAL R. GROSS & CO., INC. (202) 234-4433 1 work was to be done on humans. A later letter 2 states that though the advisory committee was 3 formed, there were, quote, "no restrictions or 4 limitations imposed," unquote, on Dr. Paulsen's 5 work. The committee was to offer advice only and 6 Dr. Paulsen was given approval to proceed as he saw 7 appropriate. 8 As far as why the research was done, 9 we've been -- in the documentation we've been able 10 to find basically three reasons. There was a 11 primary reason that related to an incident that 12 occurred in Hanford's plutonium finishing plant in 13 1962 involving what is called the Recuplex incident 14 (phonetic). 15 This is an incident caused by plutonium 16 solutions mixing in a tank that was not designed for 17 nuclear criticality. There was spermatogenesis 18 effects seen in some of the victims. The radiation 19 exposure included both neutron and gamma radiation, 20 and the study that Dr. Paulsen intended to do 21 involved both gamma and neutron radiation. I will 22 say at this time, however, that only the gamma 23 irradiation portion of the study was completed. 24 Dr. Paulsen reports also, as far as a 25 secondary reason, in an interview that my staff had NEAL R. GROSS & CO., INC. (202) 234-4433 1 with him that, "It was," quote, "it was not ethical 2 for the U.S. government to be sending up Navy and 3 Air Force pilots to monitor South Pacific and Nevada 4 bomb blasts without the government knowing what the 5 health effects were," unquote." 6 Still another reason in the documents 7 clearly indicates that there was an interest in 8 using this collected data for determining the 9 results on astronauts. In fact, the results were 10 reported in the "National Journal of Natural and 11 Manmade Radiation Science; and I forgot to write 12 down the date of that, but it was sometime in the 13 mid-1960's. 14 I have written all of this information 15 in a report which I'll make available to you. We 16 just finished our analysis on Saturday. We have no 17 clerical support, so you'll have to forgive the 18 typos, but I will give you it to you nonetheless. 19 We have a lot of information on the men, 20 how many were involved, the marital status of all 21 the men, the age breakdown of the men, the doses 22 they received and the race of all the participants. 23 Unfortunately, all of the numbers don't add up. We 24 believe that there were 64 that were exposed over 25 the year, and of the 64, 8 men received up to 400 rad NEAL R. GROSS & CO., INC. (202) 234-4433 1 to the testis. The other men received anywhere down 2 from 100 rad to 7.5 rad. 3 Dr. Paulsen reports that there was no 4 later medical follow-up to these men. The prisoners 5 indicated that they basically wanted to be left 6 alone and not tracked after they left prison. 7 Although he does admit that he did have some 8 conversations with them, there was no medical 9 follow-up. 10 The part that I'd like to spend the rest 11 of my time on, however, was when this study came up 12 for renewal in 1969, there was significant 13 controversy about the ethical judgments made in this 14 study. One of the things that Dr. Paulsen wanted to 15 do was to do the neutron portion of the study. The 16 University Hospital Clinical Investigation 17 Committee, however, said that they were going to 18 disapprove that study, quote, "on grounds of 19 inappropriate selection of subjects, the potential 20 hazards in excess of potential benefits to the 21 individual subjects and scientific value." 22 Dr. Paulsen responded in protest that he recognized 23 it was controversial but, quote, "not inherently 24 unethical." 25 In the early 1970's, a renewal of his NEAL R. GROSS & CO., INC. (202) 234-4433 1 project went before several University of Washington 2 committees. They gave their approval but said, 3 quote, "This permission does not imply approval of 4 the ethics of the proposal." The Department of 5 Institutions asked the University of Washington to 6 do another review for human rights considerations. 7 The university declined. 8 The Department of Institutions, however, 9 had their own human rights committee who reviewed 10 the project. They overruled the University of 11 Washington committees with the basis being 12 inadequate informed consent on the part of the 13 prisoners. The research director of that committee 14 said, quote, "I do not think we have a leg to stand 15 on if we allow this study to continue;" and I'll 16 continue the quote, "The committee felt strongly 17 that Paulsen is inconsistent with general 18 professional standards. It seems clearly 19 inconsistent with the standards laid down by the 20 Nuremberg Code," and I will not recite those 21 standards back to you. 22 However, the committee then said, "It is 23 doubtful," quote, this is a quote, "It is doubtful 24 that prisoner volunteers are psychologically able to 25 exercise free power of choice or that they are able NEAL R. GROSS & CO., INC. (202) 234-4433 1 to make an understanding and enlightened decision. 2 The pressures of the prison environment and the 3 possible and probable changes and/or distortions of 4 attitudes, perception and judgment must be held as 5 limiting the exercise of free choice and enlightened 6 decision beyond the point where the subject may be 7 held solely responsible for his decision." They 8 also cite that monetary rewards could definitely be 9 an inducement for their participation. 10 The Director of Research said, quote, 11 "It is my judgment that if we were to allow this to 12 proceed, we might as well quit making any statement 13 about safeguarding human rights or any other study 14 that might come along. Our integrity will have been 15 too seriously impaired." 16 In other related information relating to 17 this study and other things, we also have a copy of 18 an internal Atomic Energy Commission memo dated 19 1963, and while it does not -- we have no indication 20 that it has bearing on this particular study, it 21 does state that, "Involving human radiation 22 experiments, they do not have appear to have been in 23 compliance with criminal codes of the state of 24 Washington and there's some question as to whether 25 or not the experiments were conducted in compliance NEAL R. GROSS & CO., INC. (202) 234-4433 1 with federal laws." 2 I see that my time is over. I'll just 3 give you what our recommendations are, if that's all 4 right. I will add that this is an unfunded activity 5 by the Department of Health. We basically, 6 Mr. Bricker and myself, have been doing this on our 7 own time. So the conclusions and recommendations 8 that we offer are ours and ours alone. We will be 9 making these recommendations to the Department, but 10 you're the first to hear them. 11 We don't feel in our role that we are 12 able to make judgments on legalities or ethics, but 13 we do believe that a medical follow-up of exposed 14 individuals needs to be done. We feel that either 15 the Washington State Department of Health should 16 seek a grant from the federal government to do the 17 work themselves or strong recommendation should be 18 sent to the Federal Department of Health and Human 19 Services that they initiate a follow-up. 20 It is also our personal opinions that, 21 again, while not making judgments on law, which we 22 don't feel we're qualified to do, based on the 23 ethical questions that were raised in 1969 and '70, 24 we feel compensation is justified for these 25 individuals over and above the compensation they NEAL R. GROSS & CO., INC. (202) 234-4433 1 received during the study period. 2 And lastly, although our evaluations 3 only included the Walla Walla study, assuming that 4 the Oregon study was similar in nature, we make the 5 same recommendations for that group as well. 6 CHAIRMAN TUCKSON: Thank you very much. 7 First of all, it's going to be extremely important 8 that you make contact with staff as soon as you -- 9 because we've got to find a way to see what the 10 follow-up is. We'll get a copy of the report and 11 we'll get a chance to clean it up. 12 MR. AL CONKLIN: I also have copies of 13 all the reports that we analyzed with me, if you'd 14 like to see those. 15 CHAIRMAN TUCKSON: Let me just ask Susan 16 if she has a quick question. 17 MS. LEDERER: Can you elaborate on the 18 charge of "inappropriate selection of subjects"? 19 MR. AL CONKLIN: All I have on that, 20 actually, is the quote that was taken out of one of 21 the memos. What I cited you is the only information 22 that was available in that memo, so I don't know any 23 of the specifics behind that. It was just their 24 conclusion. 25 MR. THOMAS: I'm sorry. There's NEAL R. GROSS & CO., INC. (202) 234-4433 1 something that I'm not quite understanding. These 2 analyses which you've just prepared, which I'm very 3 eager to see the results of, were in terms of 4 information that was available in the historical 5 record, or have you attempted any further follow-up 6 on these individuals? 7 MR. AL CONKLIN: We've not done any 8 further follow-up on any of the individuals. They 9 were all contained in Dr. Paulsen's papers that were 10 in the University of Washington archives or were 11 contained in the Washington State archives out of 12 Governor Evans' related materials. 13 So, no contact with the individuals 14 themselves. I have no idea who those individuals 15 are. 16 MR. THOMAS: Can you shed any light on 17 what are some of the difficulties you're aware of 18 that would get in the way of doing some sort of 19 medical follow-up at this stage? You mentioned one 20 of them, the desire of the prisoners to remain -- to 21 be left alone. Are there others? 22 MR. AL CONKLIN: That is, of course, the 23 first obstacle I would mention. The second would be 24 even if they want to be found, can we find them? Are 25 they -- That's the common problem everyone is NEAL R. GROSS & CO., INC. (202) 234-4433 1 having right now in trying to reconstruct the past, 2 trying to find individuals that may have been harmed 3 or exposed to not just this experiment but, as you 4 heard from Gertie Hanson, all of the Hanford 5 material that was released as well. 6 So I see that the biggest obstacle to be 7 their willingness to be studied, and, even if they 8 are willing, is trying to find them. 9 MR. THOMAS: Is there difficulty 10 identifying the subjects in the first place in 11 either of the two studies? 12 MR. AL CONKLIN: I have not tried to do 13 so. I would imagine that it would be extremely 14 difficult to do so. I know that there have been 15 requests by the news media for information on the 16 names of the individuals, which has been denied 17 basically because, I believe, of the privacy act. 18 You all, as M.D.'s, would know the 19 availability of that information for legitimate 20 studies. I'm not aware of that. But trying to find 21 it ourselves on our own would be very difficult, if 22 not impossible. 23 CHAIRMAN TUCKSON: Thank you very much, 24 and please make sure that you touch base with staff. 25 MR. AL CONKLIN: I'll do that. NEAL R. GROSS & CO., INC. (202) 234-4433 1 CHAIRMAN TUCKSON: Next -- and, Harold, 2 you will help me to fix the pronunciation -- 3 Mr. Harold Bibeau. 4 MR. HAROLD BIBEAU: Bibeau. 5 CHAIRMAN TUCKSON: Bibeau. Thank you. 6 I appreciate that. Thank you very much for coming. 7 MR. HAROLD BIBEAU: Well, 30 years ago I 8 was a dumb convict. I listened to a brilliant 9 doctor explain to me how I could help NASA learn how 10 to protect astronauts in space. Rather than serving 11 my time as a local jailbird, I could actually do 12 something that would help my country and I could 13 hold my head up and be proud. 14 He explained to me how safe the 15 experiment was. He told me that in light of Nazi 16 atrocities and the Nuremberg trials, research must 17 be conducted safely and it has to be carefully 18 monitored. He assured me and others that his 19 personal ethics would not allow him to ever do 20 anything that could harm us. In the words of one of 21 the researchers, quote, "The reason the project was 22 done was that people didn't know the effects of 23 radiation on the human," end quote; and that's 1976 24 when she made that statement. 25 The project was designed by the Atomic NEAL R. GROSS & CO., INC. (202) 234-4433 1 Energy Commission Division of Biology and Medicine 2 to determine how human tissue reacts to radiation 3 damage. They wanted to discover the maximum dosage 4 that creates no tissue damage and they wanted to 5 find the minimum dosage that produces the permanent 6 damage. 7 They zapped us with dosages that were 8 high enough to cause burns and blistering to the 9 groin of the legs and hair loss to the entire groin 10 area, they sliced us open and took testicular 11 biopsies; and when we left prison no longer able to 12 sire children and no longer of any value to them, 13 they cut us off with nothing to show for our efforts 14 except everlasting pain and $100. I really don't 15 think it was worth it. 16 For the next 25 years, I gave very 17 little thought to prison, Dr. Heller or his program. 18 I had no idea what his home-built x-ray machine did 19 nor did I know how high the dosages were. 20 Dr. Heller, in a 1976 deposition, admitted that he 21 didn't fully explain the known dangers, quote, 22 "because I didn't want to frighten them," unquote. 23 He must have taken Personal Ethics 101 at the 24 University of Buchenwald. 25 Another thing I've learned is that the NEAL R. GROSS & CO., INC. (202) 234-4433 1 doctors from the AEC have called for medical 2 follow-up since 1970, and I was not aware of that 3 until March of this year. They're worried about 4 cancer occurring after a long latency period of 25 5 to 30 years. I was irradiated in 1965, my 30 years 6 are up September 29th of next year. I'd like to see 7 a doctor before that time. 8 Who is going to accept responsibility 9 for providing medical evaluations and treatment for 10 me and other research victims? We have medical 11 problems which should be looked into. I've written 12 nine letters to the Department of Energy over the 13 past several months asking them to provide for our 14 care. I have received no adequate answers. They 15 simply ignore my inquiries. 16 I think what they're doing is they're 17 realizing that almost half of us are now dead and 18 they're hoping if they simply ignore us long enough, 19 we'll all die and the problem will simply vanish. 20 But I won't go away. I feel that in view of the 21 fact that men that I'm coming in contact with today 22 are still experiencing pain, they have grave doubts 23 about their futures, and their pleas for help are 24 being ignored by the monsters who participated in 25 abuse of their bodies. NEAL R. GROSS & CO., INC. (202) 234-4433 1 My name is already appearing in national 2 newspapers, I've been on local television and my 3 face will soon be on national television. I would 4 like to let the committee know that it's my goal at 5 this time to make sure we will be cared for, we will 6 be treated. 7 And as far as the DOE is concerned, I 8 feel that they designed this program, they provided 9 funding for this program, and at this time they're 10 making absolutely no effort to follow it to an 11 honorable conclusion. With their past atrocities 12 and their current lack of response, I feel they 13 should never be trusted with a human life again; and 14 I would like to stress the word "never." 15 I'm ready for questions. 16 CHAIRMAN TUCKSON: Thank you very much 17 for your testimony. Let me just ask first then -- 18 You've given us some materials and I thank you. I 19 didn't want to read them while listening to you. I 20 wanted to give you my attention. I don't think that 21 I see in here, though, any of the responses back 22 from the people that you've written, that you 23 described. 24 MR. HAROLD BIBEAU: They're not 25 answering my letters. NEAL R. GROSS & CO., INC. (202) 234-4433 1 CHAIRMAN TUCKSON: In other words, when 2 you say "not getting an adequate response," that 3 means "no response." 4 MR. HAROLD BIBEAU: I asked for -- They 5 answered one letter in which I asked for financial 6 assistance to testify before you in San Francisco. 7 The response I got to that letter was that they 8 don't make grants, they simply won't give me any 9 money to help testify. They did not answer any 10 questions about medical follow-ups. 11 CHAIRMAN TUCKSON: So you have received 12 at no time, from the time you left the corrections 13 department system, you've received no follow-up by 14 anyone related to either the prison health system or 15 the people that conducted the tests. 16 MR. HAROLD BIBEAU: I had a physical in 17 August that was paid for by the State of Oregon. 18 CHAIRMAN TUCKSON: In August of this 19 year? 20 MR. HAROLD BIBEAU: Yes. 21 CHAIRMAN TUCKSON: So all these years. 22 Now, that physical resulted from your initiation or 23 theirs? 24 MR. HAROLD BIBEAU: Mine. 25 CHAIRMAN TUCKSON: You contacted them? NEAL R. GROSS & CO., INC. (202) 234-4433 1 MR. HAROLD BIBEAU: Yes, I contacted 2 them. 3 CHAIRMAN TUCKSON: And when you did 4 that, was there a sense -- what was it that caused 5 them to feel that they should do that? 6 MR. HAROLD BIBEAU: I believe when you 7 go into that pile of documents, you'll find that 8 there was a House bill passed in Oregon that 9 stipulates that any man that comes forward can have 10 medical evaluations and, if necessary, treatment. 11 There hasn't really been what I would consider to be 12 a really good adequate attempt to locate the men and 13 notify them. 14 CHAIRMAN TUCKSON: So we have to be very 15 precise. I want to make sure that the reason you 16 got the physical exam done was because of a bill in 17 regards to just general health in the state of 18 Oregon? 19 MR. HAROLD BIBEAU: No, it required -- 20 it deals specifically with the men that were in the 21 radiation program. 22 CHAIRMAN TUCKSON: Okay. That's great. 23 MR. THOMAS: Mr. Bibeau, were you one of 24 those patients that was asked to submit to a biopsy? 25 MR. HAROLD BIBEAU: Yes. NEAL R. GROSS & CO., INC. (202) 234-4433 1 MR. THOMAS: Can you tell us a little 2 bit about what you were told about that procedure, 3 what it was like to undergo this procedure, whether 4 or not you felt there were any long-term -- either 5 short-term or long-term consequences of that? 6 MR. HAROLD BIBEAU: Of the biopsy itself 7 or the radiation? 8 MR. THOMAS: No. Now I'm speaking of 9 just the biopsy. 10 MR. HAROLD BIBEAU: Most biopsies are -- 11 they open your scrotum, remove your testicles and 12 they take a razor blade and cut a very small piece 13 off. There is deadening involved and there isn't 14 very much pain. There is pressure. For the next 15 several weeks after that, there is a great deal of 16 pain in the area where they took the biopsy. 17 Sometimes the pain -- the spot that they 18 cut wasn't properly deadened or is a spot that 19 really didn't want to be cut. I can't tell you, but 20 if you've ever ridden a bicycle and racked yourself 21 up on the crossbars, you'll know what it felt like. 22 That's a good analogy, but it's even a little bit 23 more severe than that. 24 In the long-term -- Pardon? 25 MR. THOMAS: Do you feel you were NEAL R. GROSS & CO., INC. (202) 234-4433 1 adequately informed about that aspect of the hazards 2 of this experiment? 3 MR. HAROLD BIBEAU: I was told that all 4 that would happen from a biopsy -- When they 5 explained the procedure to me, they didn't explain 6 -- they explained nothing to me about the 7 possibility of internal bleeding, which I think the 8 last six men on the program received warnings that 9 that could happen. I was not informed that scar 10 tissue can be very painful for the rest of your 11 life. Men that I'm in contact with now that have 12 had more biopsies than I have are complaining about 13 excessive pain even today, and I believe most of 14 that is attributed to scar tissue, yeah. 15 MR. THOMAS: Well, yeah, that was going 16 to be my next question. You referred several times 17 to pain. I'm trying to get a feel for whether or 18 not you have any way of telling whether or not that 19 was a result of the effect of the x-rays per se or 20 of the surgical procedures. 21 MR. HAROLD BIBEAU: At this time I'd say 22 probably the surgical procedures and scar tissue. 23 MR. THOMAS: Did you yourself feel like 24 you have any long-term effects from that? 25 MR. HAROLD BIBEAU: I have things that I NEAL R. GROSS & CO., INC. (202) 234-4433 1 would like to have a doctor look at. I have a lump 2 on my back, I have a lump on my arm, and I have what 3 I'm calling a mole on my leg. I think they should 4 be removed and biopsied, and I think as a matter of 5 principle the Department of Energy should be paying 6 for that. 7 MR. THOMAS: And when you went in for 8 your physical by the state of Oregon, I assume you 9 raised these concerns. What kind of response did 10 you get? 11 MR. HAROLD BIBEAU: I was told by the 12 doctor at that time the only way to find out if 13 they're cancerous is to remove them and biopsy them, 14 that he can't tell from a cursory examination. 15 MR. THOMAS: Now, I understood you to 16 say that that Oregon bill would cover treatment at 17 least -- at least treatment that's related to your 18 experiences as a prisoner. 19 MR. HAROLD BIBEAU: At this point, I 20 believe the next speaker might be able to answer 21 that question. I really don't know if the burden of 22 proof is mine. I don't know if I have to go in and 23 prove that it was cancerous and try to get 24 reimbursed if it was or if they would actually pay 25 for that -- if they would pay for the biopsy. NEAL R. GROSS & CO., INC. (202) 234-4433 1 MR. THOMAS: Did you try to raise those 2 concerns when you went in for your exam? 3 MR. HAROLD BIBEAU: No. No. What I'm -- 4 My whole point at this time is this was a federal 5 project, it was funded by a federal agency, and the 6 federal agency has totally ignored all of my 7 requests for assistance. They have not given me any 8 indication at all that they're even willing to 9 listen to my concerns. As a matter of principle, I 10 will not have these removed by anyone except the 11 Department of Energy. 12 MR. THOMAS: So your beef is with the 13 federal government then rather than with your 14 Department of Corrections? 15 MR. HAROLD BIBEAU: Correct, because 16 they haven't responded. 17 MR. THOMAS: I see. Thank you. 18 MS. LEDERER: Mr. Tuckson asked the 19 question I was going to ask about, the pain you 20 experienced as a result of your participation. But 21 let me ask whether -- do you know how many of your 22 fellow research subjects have availed themselves of 23 the Oregon legislation to come in for a follow-up on 24 the medical -- 25 MR. HAROLD BIBEAU: The next speaker can NEAL R. GROSS & CO., INC. (202) 234-4433 1 answer that question. I don't know. 2 CHAIRMAN TUCKSON: Thank you. Sounds 3 like, by the way, just for staff purposes, that you 4 are in close contact with several others. 5 MR. HAROLD BIBEAU: Yes, I am. 6 CHAIRMAN TUCKSON: And that there may be 7 again a responsibility to make sure we can keep in 8 touch with you; if we need you to get in touch with 9 others, you're a person that can help us do that. 10 MR. HAROLD BIBEAU: Sure. And in this 11 packet of documents I gave you today, there is 12 testimony from some of the other men that are 13 talking about their experience and their pain 14 afterwards. 15 CHAIRMAN TUCKSON: Thank you very much 16 for coming and speaking with us today. 17 Well now, very timely, Ms. Catherine Knox, 18 who is with the Oregon Department of Corrections. 19 Welcome. 20 MS. CATHERINE KNOX: Thank you. I also 21 have -- (handing documents to the committee). 22 CHAIRMAN TUCKSON: Thank you. 23 MS. CATHERINE KNOX: I timed this, so 24 I'll try to keep it under 7 minutes. 25 I'm here today representing the Oregon NEAL R. GROSS & CO., INC. (202) 234-4433 1 Department of Corrections. One of our institutions, 2 the Oregon State Penitentiary, was the site at which 3 Dr. Carl Heller conducted radiation experiments from 4 1960 -- 5 CHAIRMAN TUCKSON: Bring that closer to 6 you, would you? Thanks. 7 Start the clock again. 8 MS. CATHERINE KNOX: Our prisoners were 9 the subjects used in these experiments. My job with 10 Corrections is provide health care to the 6,700 men 11 and women who are incarcerated in Oregon's prisons 12 today. The Heller experiments first came to my 13 attention in November 1984. Since then, with the 14 assistance of many others, I've collected and 15 reviewed as many of the records and other 16 documentation that could be found on Dr. Heller's 17 radiation experiments. 18 An examination protocol has been 19 developed and used consistently to provide annual 20 exams since 1989. A pilot project was completed in 21 1991 to see what it would take to locate the other 22 research subjects, how they might be notified and 23 then approached about participation in a medical 24 follow-up program. Mr. Klaidman -- I apologize for 25 the misspelling -- suggested that the subject of NEAL R. GROSS & CO., INC. (202) 234-4433 1 medical follow-up be the focus of my comments at 2 your meeting today. 3 There are three reasons why the subjects 4 of Dr. Heller's radiation experiments should receive 5 long-term medical follow-up and they are: That the 6 United States Atomic Energy intended to provide 7 long-term medical follow-up for the subjects of 8 these experiments, that long-term follow-up of the 9 research subjects is medically indicated, and that 10 the benefits achieved from conducting a meaningful 11 program of long-term medical follow-up exceeds the 12 disadvantages. 13 With regard to the first point that the 14 Atomic Energy intended to provide long-term 15 follow-up, in October 1970, Frank Brooks, with the 16 Atomic Energy Commission, initiated a discussion 17 with Dr. Heller about medical follow-up after the 18 subjects were released from a research program. 19 This is the first of six pieces of correspondence 20 that took place from 1970 until 1972 between the two 21 men about the protocol. Copies of this 22 correspondence are included with my written 23 statement and they're labeled "Attachment 1" 24 following the first yellow paper. 25 The correspondence also documents that NEAL R. GROSS & CO., INC. (202) 234-4433 1 Dr. Heller discussed the recommendations for 2 follow-up with the research subjects who were in 3 prison between 1970 and 1972. The people who 4 participated in the research during that time did so 5 then with the understanding that long-term medical 6 follow-up would be provided. 7 If you review these letters, you will 8 see the details of the follow-up protocol which 9 Frank Brooks and Heller agreed to by February 15 of 10 1972. The recommendations are essentially the same 11 as those recommended today. 12 Three years later in 1976, Amos Reed 13 (phonetic) the Administrator of Oregon Corrections, 14 wrote James Liverman (phonetic) of the Energy 15 Research & Development Administration to say that 16 Oregon was interested in obtaining medical follow-up 17 for the research participants. 18 Liverman wrote back within the month to 19 say that ERDA was considering how to best provide a 20 follow-up program. He invited comments on the 21 advantages of an independent medical follow-up 22 program with the methods to maintain contact with 23 participants while preserving personal privacy and 24 the possibility of a committee to oversee the 25 follow-up program. Copies of these two letters are NEAL R. GROSS & CO., INC. (202) 234-4433 1 also included in "Attachment 1." To date, no 2 follow-up has been provided by the federal 3 government or the researchers. 4 The second point, that long-term medical 5 follow-up -- or follow up is medically indicated, 6 the most conclusive opinion that follow-up of the 7 research subjects is medically necessary was made by 8 Dr. James Rutaber in 1989. 9 Dr. Rutaber reviewed the records of 10 the dosages of radiation received by the individual 11 research subjects. He interviewed Mavis Rowley 12 (phonetic) and Dr. Paulsen, and two of Dr. Heller's 13 collaborators on this research project, and 14 consulted with other experts in long-term radiation 15 effects who were available to him through his 16 employment with the Center for Environmental Health 17 at the Centers for Disease Control. 18 Dr. Rutaber provided his 19 recommendations in the form of a protocol for 20 medical follow-up. Copies of this protocol are 21 included and labeled "Attachment 2." 22 In the years between 1973, when the 23 research in Oregon was terminated, and 1988 when 24 Dr. Rutaber developed the examination protocol, 25 several other physicians who were consulted came to NEAL R. GROSS & CO., INC. (202) 234-4433 1 the same conclusion. Recommendations for follow-up 2 were made in 1976 by several experts, including 3 Dr. Edward Press (phonetic) and Marshall Parrot 4 (phonetic) with the Oregon Health Division, 5 Dr. John Ford (phonetic), Director of Nuclear 6 Medicine at Good Sam in Portland, and a 7 Dr. Leonard Seig (phonetic), an irradiation 8 specialist at the Palo Alto Medical Clinic. 9 The same conclusion was reached in 1984 10 by Les Wright, the Oregon State health officer, 11 after consultation with physicians at the Health 12 Sciences University, and again in 1987 by Dr. Fukes 13 (phonetic). The only experts who have ever publicly 14 minimized the need for long-term medical follow-up 15 have been the physicians and researchers responsible 16 for the radiation research. 17 The benefits of the follow-up program 18 exceed the disadvantages. In 1987, the Oregon 19 legislature required that the Department of 20 Corrections provide an annual exam for the persons 21 who participated in this research; however, they 22 provided no funding for it. 23 Accomplishments of the program in Oregon 24 to date are: Acknowledgment that the research took 25 place with efforts made to help answer the questions NEAL R. GROSS & CO., INC. (202) 234-4433 1 and concerns of former participants about the 2 urgency of the medical problems they experience 3 today and whether these problems might be related to 4 their radiation exposure; establishment of the 5 examination protocol that is comprehensive in the 6 scope of physical systems reviewed and also details 7 to insure both the physicians and the former 8 research subjects of the legitimacy of the follow-up 9 effort, and a demonstration that former participants 10 can be located, that they are interested in being 11 followed medically and that they will participate in 12 the examinations. 13 The cost to establish an authorized 14 follow-up program so far has been minimal. The 15 annual costs are $1,500 per participant for a year, 16 for the exam, including testicular ultrasound, lab, 17 and $25,000 a year for the psychological 18 consultation. There were no costs for the protocol. 19 It was provided by the CDC. 20 In 1991, 55,000 was paid to the Health 21 Division to update the addresses of the research 22 participants and to develop a procedure so that they 23 might be contacted. The agency also established how 24 the exams could be done by physicians at any 25 location according to the Rutaber protocol. NEAL R. GROSS & CO., INC. (202) 234-4433 1 Lastly, the Health Division developed 2 recommendations for the membership and operation of 3 an oversight committee or advisory board, which was 4 estimated to cost 143,000 a year. 5 Activities for which I do not have a 6 cost estimate are those associated with the more 7 aggressive effort to find all of the participants, 8 the costs of managing a follow-up project, or the 9 costs of treatment of major medical conditions found 10 to be related to the participants' exposure. A 11 summary of the health status of the collective group 12 of individuals participating in the follow-up 13 project is included as "Attachment 3." 14 The advisory committee should recommend 15 that medical follow-up be provided by the federal 16 government to persons who participated in Dr. Heller's 17 program. 18 I would like to conclude with a few 19 comments about consent. I understand that the 20 advisory committee will determine whether to include 21 participants of Dr. Heller's experiments in the 22 recommendations made to the President and DOE and 23 that this decision depends upon whether the research 24 subjects gave informed consent. 25 I would like to suggest that the NEAL R. GROSS & CO., INC. (202) 234-4433 1 subjects be viewed as two separate groups. The 2 first and largest group are those who signed the 3 earliest agreement that only specified skin burn. 4 This form would be considered inadequate 5 documentation to make an informed decision. 6 Fifty-four persons out of the 69 total subjects 7 signed this agreement. 8 There's been a lot of attention paid to 9 a new form developed in 1970 for testicular biopsy 10 and laboratory samples. There was no mention of the 11 subject receiving radiation, so therefore this 12 consent form is irrelevant. 13 The second group are those subjects for 14 whom there is an untitled form that lists what the 15 subject was informed of with regard to radiation and 16 testicular biopsy. What's remarkable about this 17 form is that the research subject did not sign it, 18 indicating consent. Instead, the last name of the 19 subject is printed in capital letters on the top 20 right-hand side of the page. Each form has the same 21 typewritten date at the bottom, April 22nd, 1971, 22 and Carl Heller's signature. 23 With the exception of one research 24 subject, the date April 22nd does not coincide with 25 the dates of the participants' signature on any of NEAL R. GROSS & CO., INC. (202) 234-4433 1 the other consent forms. There are only six names 2 printed on the top of these forms out of the 69 3 research subjects. 4 Even if this last form was adequate 5 documentation for the six participants, they were 6 also part of the group consulted by Dr. Heller when 7 long-term follow-up was discussed with Frank Brooks 8 between 1970 and '72. Therefore, even implied 9 consent would have been given with the understanding 10 that long-term medical follow-up was one of the 11 provisions of participation. 12 The failure then to provide follow-up is 13 a breach of the relationship between the researcher 14 and the subject providing consent. A review of the 15 documentation can only bring one to the conclusion 16 that informed consent did not occur with any of the 17 subjects who participated in Dr. Heller's research, 18 and therefore the subjects should be considered in 19 the recommendations made by the committee. 20 I'm sorry. I'm done. 21 CHAIRMAN TUCKSON: Well, don't die. I 22 don't think you have anything to be sorry about. 23 That was very, very important testimony and I just 24 wanted -- I read along. I just want to thank you 25 for the meticulousness with which you presented it. NEAL R. GROSS & CO., INC. (202) 234-4433 1 Are there any questions? 2 MR. ROYAL: Has there been any 3 discussion about letting the prisoners decide for 4 themselves whether or not they want to participate 5 in the medical follow-up study versus being given 6 some other benefit of equivalent value? 7 MS. CATHERINE KNOX: You mean such as 8 compensation? 9 MR. ROYAL: Another benefit of 10 equivalent value. It might be money, it might be 11 some other thing. 12 MS. CATHERINE KNOX: I have not had that 13 discussion with any of the people who are 14 participating in the medical follow-up program, 15 because that is what I am responsible to do. 16 MR. ROYAL: So currently the thoughts 17 are that the prisoners are being offered a single 18 option? 19 MS. CATHERINE KNOX: I need to correct 20 you. It's not just the prisoners. It's all former 21 research participants, so that includes people who 22 are in the community who have not been in the 23 community for years. 24 MR. ROYAL: And what's the number of 25 that? NEAL R. GROSS & CO., INC. (202) 234-4433 1 MS. CATHERINE KNOX: It varies from year 2 to year. In the follow-up -- or "Attachment 3," 3 which you have, I believe this last year we have a 4 total of 14, 14 men. 5 MR. ROYAL: I see what you mean. This 6 is not just for people who are currently in prison -- 7 MS. CATHERINE KNOX: That's correct. 8 MR. ROYAL: -- this is for all of those 9 60-some-odd people that participated in this. 10 MS. CATHERINE KNOX: That's correct. 11 MR. WENDALL OGG: May I -- the reason I 12 asked, recently I've studied some -- I was looking 13 and read something about prisoners -- 14 MS. LEDERER: Come up to the microphone. 15 MR. WENDALL OGG: These prisoners were 16 volunteers. Very recently it happened that I was 17 fortunate to see an article about prisoners. 18 (Clarification requested by reporter.) 19 Very recently, I read an article, it's 20 been about a month and a half, about prisoners; but 21 these prisoners, I noted, were definitely 22 volunteers. 23 MS. CATHERINE KNOX: My response -- 24 CHAIRMAN TUCKSON: Sir, we need to know 25 your name for the record. NEAL R. GROSS & CO., INC. (202) 234-4433 1 MR. WENDALL OGG: First name is Wendall, 2 last name is spelled O-G-G, Ogg. It's an old 3 Scotland name. Means "young" in Gaelic. 4 MS. CATHERINE KNOX: Dr. Heller's 5 research proposal dated 1963 says that the reason 6 that prisoners would come forward to participate in 7 this research is because of the availability of a 8 vasectomy and the money that they would receive as a 9 result of participation, the fact that prisoners 10 didn't receive much money in prison; both of those. 11 I don't think in today's human subjects review, it 12 would ever hold up to an informed consent or a true 13 volunteerism and whether that was the reason -- 14 MR. WENDALL OGG: I see. 15 MS. CATHERINE KNOX: -- the project was 16 terminated in 1973. 17 MR. THOMAS: I'd like to commend the 18 State of Oregon for taking this initiative to try to 19 get some sort of follow-up study underway. What I'm 20 about to say is in no way to be construed as a 21 criticism, but as sort of an ethics panel ourselves, 22 we're charged with what is appropriate human 23 experimentation, and in a certain sense this could 24 be viewed as yet another experiment itself. 25 So the question I pose to you is: What NEAL R. GROSS & CO., INC. (202) 234-4433 1 sort of human subjects review has Jim Rutaber 2 proposal undergone and what sort of ethical issues 3 came up in the process of that, if there has been 4 any? 5 MS. CATHERINE KNOX: A human subjects 6 review was not conducted. As part of this, we met 7 with several participants from the Oregon Health 8 Sciences University to review Dr. Rutaber 9 protocol, and we also met with the Health Division, 10 but did not go through a formal human subjects 11 review panel. 12 The discussion we had about that was 13 that there is no attempt to collect and analyze the 14 data from follow-up examinations for the purpose of 15 publishing any scientific publications. Our 16 obligation under the law is simply to provide for 17 the exam and the treatment, so it was the collective 18 opinion that it did not ever compromise research. 19 MR. THOMAS: So the take is that because 20 it's purely chemical in nature, not a research 21 activity, that there's no need for a human subjects -- 22 MS. CATHERINE KNOX: That's correct. 23 MR. THOMAS: But clearly there are 24 ethical issues which arise in any sort of screening 25 program that need to be considered in addition to NEAL R. GROSS & CO., INC. (202) 234-4433 1 the issues of whether or not prisoners would like to 2 be identified and issues of confidentiality and that 3 sort of thing. It seems to me appropriate that 4 there should be some sort of human subjects review. 5 MS. CATHERINE KNOX: I would think that 6 would be one of the advantages of establishing an 7 advisory committee. A couple of the things that 8 have happened as we've tried to implement the 9 project is, one, who is the appropriate agency or 10 the agency that's most likely to appropriately 11 contact people that have had no contact with the 12 criminal justice system for years; and I don't 13 believe that that's the Department of Corrections. 14 The second is that if a condition 15 requires treatment, at this point there's no 16 decision about whether that's radiation related or 17 not because most physicians in clinical practice 18 will tell you today that they have no ability to 19 make that determination because this kind of 20 research -- this kind of radiation is not done as a 21 clinical practice. 22 MR. THOMAS: It's my understanding that 23 the Oregon law mandates that medical care should be 24 provided, provided it was judged by some sort of 25 criteria, which I gather is not spelled out in the NEAL R. GROSS & CO., INC. (202) 234-4433 1 law itself, to be related to participation in the 2 experiment, not necessarily whether it was induced 3 by radiation; is that correct? 4 MS. CATHERINE KNOX: That's correct. 5 MR. THOMAS: Can you give us any insight 6 as to how those criteria might be developed? 7 MS. CATHERINE KNOX: Dr. Rutaber's 8 proposal was that the advisory committee be the one 9 who would establish the criteria to determine 10 whether or not a condition was related to the 11 radiation or not. In the absence of my ability to 12 fund an advisory committee, I simply go ahead with 13 any recommendation as made by the physicians who do 14 the examinations. 15 MR. THOMAS: One last question. Can you 16 enlighten us at all, if you have any inside 17 knowledge, as to what the status of possibilities 18 for follow-up of the Washington program might be? 19 MS. CATHERINE KNOX: I have no 20 knowledge. If you'd allow me one more comment, I 21 know every time we approached a group to carry out 22 the follow-up program, such as the Health Sciences 23 University, Battelle Institute, the Fred Hutchinson 24 Cancer Center, (phonetic) as well as the Health 25 Division, one of the questions was whether the NEAL R. GROSS & CO., INC. (202) 234-4433 1 participants could ever be found, and secondly, did 2 they want to participate. 3 So that's why we did the pilot program, 4 to try to find how many of these people could be 5 found. And, in fact, 20 years later many of them 6 are still living in the Northwest and could be 7 easily located if an appropriate party could be 8 identified to do that. And then based on a simple 9 mailing that we did, I believe that people are 10 willing to participate and would do at some personal 11 cost and inconvenience to themselves. 12 CHAIRMAN TUCKSON: Thanks. 13 Susan? 14 MS. LEDERER: I want to ask whether 15 currently in 1994 if the Oregon Corrections, if you 16 have ongoing human experiments being conducted at 17 all? 18 MS. CATHERINE KNOX: No. Oregon law 19 established in 1973 expressly prohibits medical 20 experimentation involving prisoners as human 21 subjects. 22 CHAIRMAN TUCKSON: Let me just ask -- 23 MS. CATHERINE KNOX: This has been very 24 difficult for me to deal with ethically for all 25 these years. I would say that Dr. Heller was also NEAL R. GROSS & CO., INC. (202) 234-4433 1 funded by the Department of -- U.S. Public Health 2 Service and did conduct a very large study involving 3 the injection of hormones into both male and female 4 subjects prior to the radiation experiments, and we 5 also had allergy experiments that were being done in 6 the early sixties. So there was quite a bit of 7 prisoner research done until 1973. 8 CHAIRMAN TUCKSON: Would you just give 9 me a little quick sense of -- There is all this 10 correspondence and even planning between the federal 11 officials and the state regarding medical follow-up, 12 and there's been lots of conversation, lots of 13 paper. In your sense of it, how is it possible that 14 with the recognition, the planning, protocols, that 15 it just didn't happen? How does something like that 16 occur? 17 MS. CATHERINE KNOX: My hypothesis is 18 that, first of all, there was incredible 19 miscommunication between the federal government and 20 the state and that there probably is like 21 miscommunication between the state and local 22 agencies. 23 I believe that in the first instance, 24 since Dr. Heller had a stroke, the people who were 25 left to carry out the final aspects of the research NEAL R. GROSS & CO., INC. (202) 234-4433 1 program maybe misunderstood kind of the conversation 2 that he and Frank Brooks had had; and this is taken 3 from the deposition of Mavis Rowley, as well as an 4 interview that occurred after an article appeared in 5 the National Enquirer in 1975 when Mavis then came 6 in and met with some of the prisoners; that it was 7 her belief that because -- when Amos Reed stopped 8 the experiment in 1973, she and Dr. Paulsen came to 9 meet with him to try to convince him to continue, 10 and it was to continue with the experiment, which is 11 what he was so adamantly opposed to. 12 Well, in her mind the experiment was the 13 continuing follow-up of these subjects, so that was 14 the miscommunication; and so Mavis went on later to 15 say that it was Oregon Corrections that prohibited 16 or prevented the follow-up from occurring. I don't 17 think that was at all what was in the mind of 18 Amos Reed when he stopped the radiation experiments. 19 Then in 1976, with the correspondence 20 between Amos Reed and Liverman, I believe the 21 correspondence there stopped because there were a 22 group of six inmates who filed suit for the lack of 23 follow-up, and that once that notice had been 24 served, all correspondence between the state and the 25 federal government ceased until the resolution of NEAL R. GROSS & CO., INC. (202) 234-4433 1 those lawsuits, and then there was no further 2 correspondence after that. 3 CHAIRMAN TUCKSON: Clearly, this trail 4 is going to be extremely important to understand, 5 how people decided just to go home. You know, I 6 mean "let's go home" after all these years. I need 7 to understand that better. Would you please make 8 sure the staff -- First of all, thank you for your 9 report, it is very detailed. We really need to make 10 sure that we can reach you again. Thank you. 11 Our last panelist for this first section 12 before we take a break -- and I apologize to my 13 colleagues and I hope that the coffee's not making 14 you uncomfortable -- Mr. Frederick -- Excuse me. 15 No, I'm wrong.