Redefining Genomic Privacy: Trust and Empowerment

Yaniv Erlich, James B Williams, David Glazer, Kenneth Yocum, Nita Farahany, Maynard Olson, Arvind Narayanan, Lincoln D Stein, Jan A Witkowski and Robert C Kain

PLOS Biology, 2014, vol. 12, issue 11, 1-5

Abstract: : Current models of protecting human subjects create a zero-sum game of privacy versus data utility. We propose shifting the paradigm to techniques that facilitate trust between researchers and participants. 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.

Date: 2014
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Persistent link: https://EconPapers.repec.org/RePEc:plo:pbio00:1001983

DOI: 10.1371/journal.pbio.1001983

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