Redefining genomic privacy: Trust and empowerment

Abstract: Fulfilling the promise of the genetic revolution requires the analysis of large datasets contain-ing information from thousands to millions of participants. However, sharing human genomic data re-quires protecting subjects from potential harm. Current models rely on de-identification techniques in which privacy versus data utility becomes a zero-sum game. In-stead, 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 fa-cilitate 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. Introduction: The Ris