Tab K Memoranda concerning sampling of experiments - Memorandum from Duncan Thomas regarding proposed scheme for sampling experiments DISCLAIMER The following is a staff memorandum or other working document prepared for the members of the Advisory Committee on Human Radiation Experiments. It should not be construed as representing the final conclusions of fact or interpretation of the issues. All staff memoranda are subject to revision based on further information and analysis. For conclusions and recommendations of the Advisory Committee, readers are advised to consult the Final Report to be published in 1995. MEMORANDUM TO: Members of the Advisory Committee on Human Radiation Experiments FROM: Duncan Thomas DATE: July 19,1994 (Prepared on June 3,1994) RE: Proposed Scheme for Sampling Experiments 1. This note is aimed primarily at the medical experiments, since the number of instances of intentional environmental releases appears to be too small to require any form of sampling. 2. I am operating under the assumption that there may be many experiments that potentially fall under our purview, as defined in the companion document, and that we will not wish to describe each of them in detail. Instead, we will aim to characterize the principal types of experiments, provide an indication of the extent of the problem, and then describe a few representative or extreme examples of each type. Should it develop that the number of experiments is not so large, then this proposal would become irrelevant. 3. A truly scientific sampling scheme would begin with a definition of a sampling frame of all possible observations and then select a random sample from it, possibly stratify- ing on various aspects to ensure adequate representation of all relevant features. This is clearly impossible in this situation, since the universe of all medical experiments is difficult to identify because of the secrecy aspect and in any event would require unreasonable effort to assemble. The purpose is therefore to help us understand the main dimensions we should consider for organizing our report and to prioritize the search for information. A secondary purpose might be to provide some summary data for the report on the frequency of ethical abuses, should it prove helpful. 4. Because of the difficulty of identifying secret experiments, this proposal does not replace the need for staff to continue its detective work chasing up leads. Nor does it replace the need for the committee to provide on-going guidance to the staff and agencies about priorities based on their general background knowledge or intuition. I anticipate that the more formal statistical data collection be done in parallel with these other activities, with the aim of providing interim guidance about classification of experiments and priority targets for discovery within the next few meetings. Should this prove rewarding, the data base might continue to be expanded as the work progresses and perhaps used in the final report, but otherwise could be abandoned with little effort wasted. 1 5. I therefore suggest that the staff begin assembling a computer data base comprising all medical experiments that have so far been identified, providing summary data on each for the various dimension defined in the companion document. The following sources of information should be included: a. The various agency records retrieval processes b. The DOE helpline c. Media accounts d. Advocacy groups, open literature, selected institution records, etc. 6. Some guidance regarding the scope of studies to be included will doubtless be needed from the subcommittee to avoid an undue burden of staff effort entering data on experiments that we have little or no interest in. 7. Once a reasonable amount of data has been accumulated from all sources (even if known to be incomplete), some initial tabulations along dimensions to be chosen by the subcommittee should be produced. This would lead to a first cut at a system of categories that might be used for the report. 8. Once we are agreed on a tentative system of categories, I propose we randomly select a few examples of each of the larger categories and obtain further information on each. This might be supplemented by additional nonrandom samples that are of particular interest (e.g., those already well documented, particularly egregious examples, secret experiments requiring further digging). Study of the resulting documentation might suggest further subdivision or rearrangement of our categories, a refinement of our priorities, or a selection of further random or nonrandom samples in an iterative process. 9. It is not clear whether any statistical data will be needed for the final report, but it is conceivable that the committee may wish to make summary statements, such as the frequency of ethical violations in different periods or the level of risk for compensation purposes. If such statements purport to represent the typical standards of practice, then they need to be based on some defined sampling scheme (even if flawed) rather than on simply anecdotal evidence. 2