DOI: 10.1101/006601Jun 25, 2014Paper

Redefining Genomic Privacy: Trust and Empowerment

BioRxiv : the Preprint Server for Biology
Arvind NarayananYaniv Erlich

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 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.

Related Concepts

Related Feeds

BioRxiv & MedRxiv Preprints

BioRxiv and MedRxiv are the preprint servers for biology and health sciences respectively, operated by Cold Spring Harbor Laboratory. Here are the latest preprint articles (which are not peer-reviewed) from BioRxiv and MedRxiv.

Related Papers

Neuroinformatics
Marco D SoraniShelly R Cooper
The American Journal of Bioethics : AJOB
Robert Gellman
© 2021 Meta ULC. All rights reserved