Nat Rev Genet. 2008 May;9(5):406-11.

From genetic privacy to open consent.

Lunshof JE, Chadwick R, Vorhaus DB, Church GM.

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Department of Molecular Cell Physiology, c/o room M236, Faculty of Earth and Life Sciences, VU University Amsterdam, De Boelelaan 1085, 1081 HV Amsterdam, The Netherlands. jeantine.lunshof@falw.vu.nl

Abstract

Recent advances in high-throughput genomic technologies are showing concrete results in the form of an increasing number of genome-wide association studies and in the publication of comprehensive individual genome-phenome data sets. As a consequence of this flood of information the established concepts of research ethics are stretched to their limits, and issues of privacy, confidentiality and consent for research are being re-examined. Here, we show the feasibility of the co-development of scientific innovation and ethics, using the open-consent framework that was implemented in the Personal Genome Project as an example.

PMID:: 18379574; [PubMed - indexed for MEDLINE]

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