Redefining genomic privacy: trust and empowerment

Erlich, Y., Williams, J. B., Glazer, D., Yocum, K., Farahany, N., Olson, M., Narayanan, A., Stein, L. D., Witkowski, J. A., Kain, R. C. (2014) Redefining genomic privacy: trust and empowerment. Plos Biology, 12 (11). e1001983. ISSN 1544-9173

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URL: http://www.ncbi.nlm.nih.gov/pubmed/25369215
DOI: 10.1371/journal.pbio.1001983

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.

Item Type: Paper
Subjects: bioinformatics
bioinformatics > genomics and proteomics
CSHL Authors:
Communities: Banbury Center
Depositing User: Matt Covey
Date Deposited: 14 Nov 2014 19:41
Last Modified: 14 Nov 2014 19:41
PMCID: PMC4219652
Related URLs:
URI: http://repository.cshl.edu/id/eprint/30914

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