THE RESPONSIBILITY OF OVERSIGHT IN GENETIC RESEARCH AND TECHNOLOGYDEVELOPMENT NIH GUIDE, Volume 25, Number 8, March 15, 1996 P.T. 42 Keywords: Ethics/Values in Science & Technol Public Responsibility in Medicine and Research National Center for Human Genome Research Tufts University School of Medicine Public Responsibility in Medicine and Research (PRIM&R) is presenting a novel conference on the ethical practice of genetic research and genetic technology development. This follow-up conference to PRIM&R's premier genetics conference held in May of 1994, "The Ethical Implications of the New Genetics," will seek to reflect on problems raised by the accelerating pace of genetic discovery and application into medical practice by focusing on two challenges in the oversight of genetic research: o How can IRBs become comfortable with the special issues raised by the inherent qualities of genetic research: e.g., privacy for research subjects; manipulation of the human genome; pre-symptomatic knowledge of disease states; implied consent of family members? o How can companies engaged in basic genetic research and new technology development, in creating appropriate oversight guidance for their research protocols, product development, and marketing plans, benefit from the wisdom of twenty years of academic IRBs? The conference will provide models of and ideas about how organizational oversight of genetic research protocols can best be structured. The conference will also examine current examples of genetics moving from the lab bench into practice (for example, our Panel on the use of the BRCA1 and BRCA2 genes in testing breast cancer patients). We will also invite an open exchange of perspectives and expectations about the conduct of genetic research protocols (e.g., gene therapy, genetic testing) in our Round Table discussion involving subjects who have participated in diverse protocols, providers of genetic services, and clinical investigators. Through focused and "tracked" workshop discussions, attendees and faculty will together look at the cultural and gender-based context of conducting ethical protocols involving families. Individual registration fee is $300 per person. There is an institutional rate of $1100 for the first four persons and $250 for each additional person. Those requiring financial assistance are encouraged to contact PRIM&R for scholarship information. INQUIRIES Advance registration for the meetings is required by April 25. For complete program, additional information and registration, address inquiries to: PRIM&R 132 Boylston Street Boston, MA 02116 Telephone: (617) 423-4112 FAX: (617) 423-1185 .
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