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Redefining Genomic Privacy: Trust and Empowerment

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 whi...

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Detalles Bibliográficos
Autores principales: Erlich, Yaniv, Williams, James B., Glazer, David, Yocum, Kenneth, Farahany, Nita, Olson, Maynard, Narayanan, Arvind, Stein, Lincoln D., Witkowski, Jan A., Kain, Robert C.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4219652/
https://www.ncbi.nlm.nih.gov/pubmed/25369215
http://dx.doi.org/10.1371/journal.pbio.1001983
Descripción
Sumario: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.