Open Access Data Sharing in Genomic Research

Genes

Stacey Pereira¹  Richard A. Gibbs² 

[1] Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA; E-Mail:;Human Genome Sequencing Center, Baylor College of Medicine, Houston, TX 77030, USA; E-Mail:

关键词: data sharing;    genomics;    privacy;    genetic discrimination;    open access database;   

DOI  :  10.3390/genes5030739

来源: mdpi

【 摘 要 】

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.

【 授权许可】

CC BY   
© 2014 by the authors; licensee MDPI, Basel, Switzerland.