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policies that should be put into place to regulate research that involves human genetic information.
On November 1, 1997, the National Research Council's Board on Biology brought together a group of scientists and other experts to discuss the policy issues raised by the ongoing revolution in genetic science. The primary reason for the workshop, called "Privacy Issues in Biomedical and Clinical Research," was the worry that federal legislation intended to ensure the privacy of genetic information in medical records could have unanticipated—and damaging—consequences for research. But the discussions at the workshop also identified a number of other problems and potential problems concerning genetic research. For example, in universities and research hospitals an important safeguard against the misuse of genetic information generated by research is the institutional review board (IRB), which must review and approve all research affecting humans; workshop participants identified weaknesses that hamper IRB review of genetic research protocols.
The following is a synopsis and synthesis of the workshop's proceedings. It identifies the main concerns of scientists and others involved with genetic research, it pinpoints particular pitfalls that policy makers should be aware of, and it offers suggestions for the sorts of policies that would allow biomedicine to continue its recent history of dramatic advances.