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Science 27 August 1999:
Vol. 285. no. 5432, pp. 1359 - 1361
DOI: 10.1126/science.285.5432.1359
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Policy Forum
ETHICS:
Privacy in Genetics Research
B. P. Fuller,* M. J. Ellis Kahn, P. A. Barr, L. Biesecker, E. Crowley, J. Garber, M. K. Mansoura, P. Murphy, J. Murray, J. Phillips, K. Rothenberg, M. Rothstein, J. Stopfer, G. Swergold, B. Weber, F. S. Collins, K. L. Hudson
Rapid advances in genetics research and the emerging applications to medical practice have heightened public awareness and public concerns about who will have access to this information and how it will be used. In addition to concerns about the privacy of genetic information maintained in medical records, however, is the concern about the privacy of genetics information maintained in experimental research records. This article presents the National Action Plan on Breast Cancer (NAPBC) recommendations to protect the privacy of experimental genetics research records.
The authors are members of the Privacy Workshop Planning Subcommittee of the National Action Plan on Breast Cancer (NAPBC).
*To whom correspondence should be addressed. E-mail: barbaraf{at}exchange.nih.gov
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