title: Redefining genomic privacy: trust and empowerment.
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.
authors.affiliation: Whitehead Institute for Biomedical Research, Nine Cambridge Center, Cambridge, Massachusetts, United States of America.
authors.forename: Yaniv
authors.initials: Y
authors.lastname: Erlich
authors.affiliation: Google Inc., Mountain View, California, United States of America.
authors.forename: James B
authors.initials: JB
authors.lastname: Williams
authors.affiliation: Google Inc., Mountain View, California, United States of America.
authors.forename: David
authors.initials: D
authors.lastname: Glazer
authors.affiliation: Illumina Inc., San Diego, California, United States of America.
authors.forename: Kenneth
authors.initials: K
authors.lastname: Yocum
authors.affiliation: Duke University School of Law, Duke Science & Society, Durham, North Carolina, United States of America.
authors.forename: Nita
authors.initials: N
authors.lastname: Farahany
authors.affiliation: University of Washington, Port Orford, Oregon, United States of America.
authors.forename: Maynard
authors.initials: M
authors.lastname: Olson
authors.affiliation: Department of Computer Science, Princeton University, Princeton, New Jersey, United States of America.
authors.forename: Arvind
authors.initials: A
authors.lastname: Narayanan
authors.affiliation: Ontario Institute for Cancer Research, Toronto, Ontario, Canada; Department of Molecular Genetics, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Lincoln D
authors.initials: LD
authors.lastname: Stein
authors.affiliation: Banbury Center, Cold Spring Harbor Laboratory, Huntington, New York, United States of America.
authors.forename: Jan A
authors.initials: JA
authors.lastname: Witkowski
authors.affiliation: Illumina Inc., San Diego, California, United States of America.
authors.forename: Robert C
authors.initials: RC
authors.lastname: Kain
mesh_terms: D055812:Community-Based Participatory Research; D030661:Genetic Privacy; D015894:Genome, Human; D023281:Genomics / Q000331:legislation & jurisprudence*; D006801:Humans; D007258:Informed Consent; D035502:Trust