Policy ForumGenomics

Genomics, Biobanks, and the Trade-Secret Model

Science  15 Apr 2011:
Vol. 332, Issue 6027, pp. 309-310
DOI: 10.1126/science.1199554

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Summary

Genomic biobanks—repositories of human DNA and/or associated data, collected and maintained for biomedical research—present ethical challenges different from those traditionally associated with medical research. Historically, when researchers obtained and used tissue samples, it was for defined purposes and the nature of the research was disclosed to contributors, who were asked to consent to the specific research project. With genomic biobanks, in contrast, the entity holding the samples may not be involved in the research, and future uses of the samples may be unknown. Although traditional research promised confidentiality and/or anonymity to participants, advances in DNA technology may render these safeguards meaningless (13). As a consequence, many ethicists argue that traditional informed consent may be illusory if not impossible (1, 4) and that different approaches to the ethics of genetic sample collections are needed (5, 6).