Erlich, Y., Williams, J. B., Glazer, D., Yocum, K., Farahany, N., Olson, M., Narayanan, A., Stein, L. D., Witkowski, J. A., Kain, R. C. (November 2014) Redefining genomic privacy: trust and empowerment. Plos Biology, 12 (11). e1001983. ISSN 1544-9173
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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.
| Item Type: | Paper |
|---|---|
| Subjects: | bioinformatics bioinformatics > genomics and proteomics |
| CSHL Authors: | |
| Communities: | Banbury Center |
| Depositing User: | Matt Covey |
| Date: | November 2014 |
| Date Deposited: | 14 Nov 2014 19:41 |
| Last Modified: | 14 Nov 2014 19:41 |
| PMCID: | PMC4219652 |
| Related URLs: | |
| URI: | https://repository.cshl.edu/id/eprint/30914 |
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