PT  - JOURNAL ARTICLE
AU  - Arvind Narayana
AU  - Kenneth Yocum
AU  - David Glazer
AU  - Nita Farahany
AU  - Maynard Olson
AU  - Lincoln D. Stein
AU  - James B. Williams
AU  - Jan A. Witkowski
AU  - Robert C. Kain
AU  - Yaniv Erlich
TI  - Redefining Genomic Privacy: Trust and Empowerment
AID  - 10.1101/006601
DP  - 2014 Jan 01
TA  - bioRxiv
PG  - 006601
4099  - http://biorxiv.org/content/early/2014/06/25/006601.short
4100  - http://biorxiv.org/content/early/2014/06/25/006601.full
AB  - 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.