ANTICIPATING ENHANCEMENT--ETHICAL, LEGAL, SOCIAL ISSUES

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THIS IS A SHANNON AWARD PROVIDING PARTIAL SUPPORT FOR THE RESEARCH PROJECTS THAT FALL SHORT OF THE ASSIGNED INSTITUTE'S FUNDING RANGE BUT ARE IN THE MARGIN OF EXCELLENCE. THE SHANNON AWARD IS INTENDED TO PROVIDE SUPPORT TO TEST THE FEASIBILITY OF THE APPROACH; DEVELOP FURTHER TESTS AND REFINE RESEARCH TECHNIQUES; PERFORM SECONDARY ANALYSIS OR AVAILABLE DATA SETS; OR CONDUCT DISCRETE PROJECTS THAT CAN DEMONSTRATE THE PI'S RESEARCH CAPABILITIES OR LEND ADDITIONAL WEIGHT TO AN ALREADY MERITORIOUS APPLICATION. THE ABSTRACT BELOW IS TAKEN FROM THE ORIGINAL DOCUMENT SUBMITTED BY THE PRINCIPAL INVESTIGATOR. DESCRIPTION (Adapted from the Investigator's Abstract): The investigators propose to delineate the major ethical, legal and social issues accompanying the use of genomic information to enhance normal traits in individuals and families, and to identify the precedents that best illuminate those issues for policy-making purposes. Questions about the use of genomic information for enhancement purposes cut across all three types of new medical tools expected from human genome research: diagnostic tests, new drugs and biologicals, and new human gene transfer therapies. Thus far, the ELSI research community has focused only on the first set of genomic products. By addressing the issues of "genetic enhancement" that all these tools share, this project is designed to bridge the work to date with the challenges that await the Human Genome Project on the other side of its now infamous "therapeutic gap." The investigators' approach is traditional for policy analysis: within each sphere, they will explore existing practices that seem analogous to genetic enhancement (e.g., cosmetic surgery, performance-enhancing drug use in sports and mental health, sex selection, pediatric growth promotion, vaccination), and spell out the implications of using them as models for policies in genetics. Their goal is to use this analysis to generate specific positions on five urgent issues of genetic enhancement policy: 1. Do the human subjects of clinical research on genetic enhancement interventions require special protections? 2. How should the professionally acceptable limits of genomic services be drawn? 3. What constitutes fair access to genetic enhancement services? 4. How should genetic enhancement technologies be regulated? 5. How should support for research towards germ-line gene therapy be affected by genomics' genetic enhancement capacities? The project's methods will be primarily analytic and discursive: the investigators will be critiquing, reconstructing, and proposing normative arguments on the basis of the literature about the existing precedents, rather than generating new primary data about any of them. On the other hand, they will inform their analyses with new data as it emerges in two ways. First, they will collaborate with a new interdisciplinary study of traditional "enhancement" practices within medicine (at the Hastings Center), to learn from the work of its research team as they examine the context of the precedents. Second, the investigators will take advantage of their own institution's scientific and medical resources, in order to insure that their work is as scientifically accurate and timely as possible.