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GENETICS: Genomic Research and Human Subject Privacy
Zhen Lin,1 Art B. Owen,2 Russ B. Altman1*
Public genetic sequence databases are a critical part of our academic biomedical research infrastructure. However, human genetic data should only be made public if we can adequately protect the privacy of research subjects. Individual genomic sequence data (such as SNPs) are quite "identifiable" using common definitions, while our efforts to understand disease susceptibility or therapeutic opportunity require access to large genomic data sets. The authors of this Policy Forum argue that surprisingly small amounts of genomic sequence data are identifiable. Therefore, the special privacy challenges posed by genomic data need to be addressed with new policies or creative technical approaches.
1Department of Genetics, Stanford University School of Medicine, CA 94305-5120, USA. 2Department of Statistics, Stanford University, CA 94035-4065, USA.
*To whom correspondence should be addressed. E-mail: russ.altman{at}stanford.edu
The editors suggest the following Related Resources on Science sites:
In Science Magazine
LETTERS
Patricia A. Roche;, Bernardo A. Huberman, Tad Hogg;, Russ B. Altman, Zhen Lin, and Art B. Owen (25 February 2005) Science307 (5713), 1200c.
[DOI: 10.1126/science.307.5713.1200c] |Full Text »|PDF »
NEWS FOCUS
Jocelyn Kaiser (9 July 2004) Science305 (5681), 168.
[DOI: 10.1126/science.305.5681.168] |Summary »|Full Text »|PDF »
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