News and CommentBiomedical Policy

Whose DNA Is It, Anyway?

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Science  24 Oct 1997:
Vol. 278, Issue 5338, pp. 564-567
DOI: 10.1126/science.278.5338.564

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Three of the U.S. National Institutes of Health are trying to open up collections of DNA to spur hunts for disease genes, but clinicians are holding onto their data out of fear that molecular biologists will skim the cream off years of their painstaking work. Also at stake are the rights of donors--many of whom are members of families carrying disease-related genes--to research results derived from their own DNA. Now a patients' rights organization has taken matters into its own hands by sponsoring research projects with the proviso that data be shared.