RT Journal Article
SR Electronic
T1 Redefining Genomic Privacy: Trust and Empowerment
JF bioRxiv
FD Cold Spring Harbor Laboratory
SP 006601
DO 10.1101/006601
A1 Arvind Narayana
A1 Kenneth Yocum
A1 David Glazer
A1 Nita Farahany
A1 Maynard Olson
A1 Lincoln D. Stein
A1 James B. Williams
A1 Jan A. Witkowski
A1 Robert C. Kain
A1 Yaniv Erlich
YR 2014
UL http://biorxiv.org/content/early/2014/06/25/006601.abstract
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.