The Ethical, Legal, and Social Implications of the Genome Project
by Irma S. Jarcho Dr. Eric M. Meslin, Head of the ELSI (Ethical, Legal, and Social Implications) Program of the Human Genome Project (HGP), addressed the National Association of Biology Teachers at its annual convention at Charlotte, NC, 16-19 October 1996. The ELSI Program includes a working group in the Department of Energy as well as the NIH program itself, and, according to Dr. Meslin, it is integral to the workings of the HGP.
Meslin listed the priority areas for ELSI as privacy and fairness in the use of genetic information, confidentiality, especially with regard to insurance, and genetic technology and forensic evidence. The issues surrounding genetic research include its predictive ability and its relational importance. If you have a gene for a certain disease, what are the implications not just for you and your immediate family, but also for the future?
There is a concerted push for the education of both public and private professionals, mostly in the health sciences. There is a Human Genome Education Model Program, and ELSI Electronic Casebook, and a National Coalition for Health Profession Educatio n in Genetics, all part of ELSI Program activities.
Dr. Meslin talked about concerns for the future. What issues should we be thinking about? How can we insure the public will be genetically literate? How will we know whether legislative solutions to genetic discrimination will be effective? How sho uld we move genetic testing from the bench to the bedside? What tools will we need? How will we judge our success? These are questions to ponder as we enter the Genome Age.
Dr. Meslin's talk and that of Dr. Francis Collins at the banquet (see separate article) were only two of numerous presentations on genetics at the convention. Other major topics represented were helpful hints for the biology classroom, advanced uses of computers, including the Internet, bioethics, and biotechnology.
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