At the workshop, David Korn was correct that practical, effective means exist at present to protect research subjects from stigma or penalty, through degrees of "anonymization" (my noun, not his) of medical records. If I correctly read the workshop, his position captured the desire, if not the actual agenda, of most workshop participants. As a lawyer who works in the legislative and regulatory arenas of Washington, it struck me that the various institutions and points of view represented around the table could form an effective coalition, not only to ensure that legislation and regulation do not needlessly impede genetic research, but also to advance a more cooperative, responsibility-based social response to the genetic revolution. Many of the organizations represented have their own efforts under way in support of responsible privacy measures to protect research subjects from harm. Yet the patients' groups, private and public research institutions, professional associations, companies, and agencies present represented a potential coalition whose impact could be greater than the sum of its parts.



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