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, Robert C. Kain

Research output: Contribution to journalArticle

54 Scopus citations

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.

Original languageEnglish (US)
JournalPLoS biology
Volume12
Issue number11
DOIs
StatePublished - 2014

All Science Journal Classification (ASJC) codes

  • Neuroscience(all)
  • Biochemistry, Genetics and Molecular Biology(all)
  • Immunology and Microbiology(all)
  • Agricultural and Biological Sciences(all)

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    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). https://doi.org/10.1371/journal.pbio.1001983