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Redefining Genomic Privacy: Trust and Empowerment

Author(s): Erlich, Y; Williams, JB; Glazer, D; Yocum, K; Farahany, N; et al

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Abstract: Fulfilling the promise of the genetic revolution requires the analysis of large datasets containing information from thousands to millions of participants. However, sharing human genomic data requires protecting subjects from potential harm. Current models rely on de-identification techniques in which privacy versus data utility becomes a zero-sum game. Instead, we propose the use of trust-enabling techniques to create a solution in which researchers and participants both win. To do so we introduce three principles that facilitate trust in genetic research and outline one possible framework built upon those principles. Our hope is that such trust-centric frameworks provide a sustainable solution that reconciles genetic privacy with data sharing and facilitates genetic research.
Publication Date: 4-Nov-2014
Electronic Publication Date: 4-Nov-2014
Citation: Erlich, Y, Williams, JB, Glazer, D, Yocum, K, Farahany, N, Olson, M, Narayanan, A, Stein, LD, Witkowski, JA, Kain, RC. (2014). Redefining Genomic Privacy: Trust and Empowerment. PLoS Biology, 12 (10.1371/journal.pbio.1001983
DOI: doi:10.1371/journal.pbio.1001983
Type of Material: Journal Article
Journal/Proceeding Title: PLoS Biology
Version: Final published version. This is an open access article.

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