Redefining Genomic Privacy: Trust and Empowerment

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

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 that treat privacy versus data utility as a zero-sum game. Instead we propose using trust-enabling techniques to create a solution where 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.