Redefining genomic privacy: trust and empowerment

PLoS Biol. 2014 Nov 4;12(11):e1001983. doi: 10.1371/journal.pbio.1001983. eCollection 2014 Nov.

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 in which privacy versus data utility becomes a zero-sum game. Instead, 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 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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Community-Based Participatory Research
  • Genetic Privacy*
  • Genome, Human*
  • Genomics / legislation & jurisprudence*
  • Humans
  • Informed Consent*
  • Trust*

Grants and funding

The Banbury meeting was funded by Illumina (http://www.illumina.com/). Two funder members (RCK, KY) are also co-authors of the paper. However, the funder had no privileged role in organizing the meeting, the content of the discussions, or the conclusion of the manuscript.