Evaluating Human Genetic Diversity (1997) / Chapter Skim
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EXECUTIVE SUMMARY
EXECUTIVE SUMMARY
Pages 1-9
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From page 1... ...
Accordingly, because there was no sharply defined proposal that the committee could evaluate, it chose to examine the scientific merits and value of research on human genetic variation and the organizational, policy, and ethical issues that such research poses in a more-general context. The committee, which comprised representatives of all the relevant disciplines, met on 4 occasions to respond to its charge.
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Careful variability sampling in conjunction with the Human Genome Project could contribute fundamentally to a new era of modern molecular medicine and transform scientific understanding of human evolution and the course of human prehistory. However, the committee foresees numerous ethical, legal, and human-rights challenges in the prosecution of a global effort and offers possible guidelines to the resolution of some, albeit not all, of the challenges that the committee identifies.
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3 v, ca m o o cq a' ·bC a' S~ bC VO ¢ E~ V, ca m o o o z ca S~ + ~ 4= ·0 C.)
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Therefore, this form of sampling would greatly increase the biomedical utility of a human genome sample collection. Of the various sampling strategies discussed and summarized in table 1, population-based sampling strategy III, in which only basic group-identification data are gathered, is recommended over the other strategies since the data and specimens cannot be linked to specific individuals.
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From page 5... ...
With currently available laboratory and information technologies, the material-management and data-management aspects of a coordinated human genome variation research effort do not appear to constitute a serious barrier to implementation of the project. There are multiple feasible models for specimen and data management and numerous instances of international cooperation in the creation of shared repositories of biologic tissue and data.
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The confluence of several sets of ethical considerations gives that practice greater risks that human genetic variation researchers must recognize. Continued use of outmoded social categories to structure biomedical research, emerging possibilities for commercializing biomedical knowledge, and heightened awareness of the stigmatizing potential of genetic information all increase public concern about human genetic variation research.
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From page 7... ...
For any specific goal-oriented protocol, it should be possible to anticipate the risks and benefits to the subjects and pursue informed consent accordingly. For projects that are not able to specify goals in sufficient detail to quantify risks and benefits reasonably, the worst-case scenario should be assumed: the benefits will be at the lowest anticipated level, and the risks at the highest.
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ORGANIZATION AND MANAGEMENT We recognize that neither the National Science Foundation nor the National Institutes of Health are prepared or even able to fund a global survey such as that contemplated and that they seek advice on the role they should play. Accordingly, the committee offers the following guidance: These agencies should focus their financial support, at least initially, on projects originating in the United States and expand their support to the international scene only after the US activities are successfully launched.
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From page 9... ...
Such information would be of substantial use to many in the scientific community. The committee recommends that NIH or NSF identify all such repositories as well as the availability of the specimens to the scientific community in the United States as well as elsewhere.
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