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Open AccessCommentary
Genes 2014, 5(3), 739-747; doi:10.3390/genes5030739

Open Access Data Sharing in Genomic Research

1
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA
2
Human Genome Sequencing Center, Baylor College of Medicine, Houston, TX 77030, USA
*
Author to whom correspondence should be addressed.
Received: 13 June 2014 / Revised: 14 August 2014 / Accepted: 18 August 2014 / Published: 29 August 2014
(This article belongs to the Special Issue Grand Celebration: 10th Anniversary of the Human Genome Project)
View Full-Text   |   Download PDF [75 KB, uploaded 29 August 2014]

Abstract

The current emphasis on broad sharing of human genomic data generated in research in order to maximize utility and public benefit is a significant legacy of the Human Genome Project. Concerns about privacy and discrimination have led to policy responses that restrict access to genomic data as the means for protecting research participants. Our research and experience show, however, that a considerable number of research participants agree to open access sharing of their genomic data when given the choice. General policies that limit access to all genomic data fail to respect the autonomy of these participants and, at the same time, unnecessarily limit the utility of the data. We advocate instead a more balanced approach that allows for individual choice and encourages informed decision making, while protecting against the misuse of genomic data through enhanced legislation. View Full-Text
Keywords: data sharing; genomics; privacy; genetic discrimination; open access database data sharing; genomics; privacy; genetic discrimination; open access database
This is an open access article distributed under the Creative Commons Attribution License (CC BY 3.0).

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MDPI and ACS Style

Pereira, S.; Gibbs, R.A.; McGuire, A.L. Open Access Data Sharing in Genomic Research. Genes 2014, 5, 739-747.

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