Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection

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Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection

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Title: Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection
Author: Heeney, Catherine; Hawkins, Naomi; de Vries, Jantina; Boddington, Paula; Kaye, Jane; Bobrow, Martin; Weir, Bruce; P3G Consortium; Church, George McDonald

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Citation: P3G Consortium, George Church, Catherine Heeney, Naomi Hawkins, Jantina de Vries, Paula Boddington, Jane Kaye, Martin Bobrow, and Bruce Weir. 2009. Public access to genome-wide data: five views on balancing research with privacy and protection. PLoS Genetics 5(10).
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Abstract: Introductory paragraph: Just over twelve months ago, PLoS Genetics published a paper [1] demonstrating that, given genome-wide genotype data from an individual, it is, in principle, possible to ascertain whether that individual is a member of a larger group defined solely by aggregate genotype frequencies, such as a forensic sample or a cohort of participants in a genome-wide association study (GWAS). As a consequence, the National Institutes of Health (NIH) and Wellcome Trust agreed to shut down public access not just to individual genotype data but even to aggregate genotype frequency data from each study published using their funding. Reactions to this decision span the full breadth of opinion, from ‘‘too little, too late—the public trust has been breached’’ to ‘‘a heavy-handed bureaucratic response to a practically minimal risk that will unnecessarily inhibit scientific research.’’ Scientific concerns have also been raised over the conditions under which individual identity can truly be accurately determined from GWAS data. These concerns are addressed in two papers published in this month’s issue of PLoS Genetics [2,3]. We received several submissions on this topic and decided to assemble these viewpoints as a contribution to the debate and ask readers to contribute their thoughts through the PLoS online commentary features. Five viewpoints are included. The Public Population Project in Genomics (P3G) is calling for a universal researcher ID with an access permit mechanism for bona fide researchers. The contribution by Catherine Heeney, Naomi Hawkins, Jantina de Vries, Paula Boddington, and Jane Kaye of the University of Oxford Ethox Centre outlines some of the concerns over possible misuse of individual identification in conjunction with medical and family history data, and points out that if geneticists mishandle public trust, it will backfire on their ability to conduct further research. George Church posits that actions directed toward restricting data access are likely to exclude researchers who might provide the most novel insights into the data and instead makes the argument that full disclosure and consent to the release of genomic information should be sought from study participants, rather than making difficult-to-guarantee promises of anonymity. Martin Bobrow weighs the risks and benefits and proposes four steps that represent a middle ground: Retain restricted access for now, make malicious de-identification practices illegal, increase public awareness of the issues, and encourage recognition that scientists have a special professional relationship of trust with study participants. Finally, Bruce Weir provides a commentary on the contribution of the two research articles from Braun et al. [2] and Visscher and Hill [3].
Published Version: doi://10.1371/journal.pgen.1000665
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