Abstract

http://ssrn.com/abstract=1473924
 
 

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Enabling Responsible Public Genomics


John M. Conley


University of North Carolina (UNC) at Chapel Hill - School of Law

Daniel B. Vorhaus


Robinson, Bradshaw & Hinson, P.A.

Adam Doerr


Robinson, Bradshaw & Hinson, P.A.


UNC Legal Studies Research Paper No. 1473924

Abstract:     
As scientific understandings of genetics advance, researchers require increasingly rich data-sets that combine genomic data from large numbers of individuals with medical and other personal information. Linking individuals’ genetic data and personal information precludes anonymity and produces medically significant information - a result not contemplated by the established legal and ethical conventions governing human genomic research. To pursue the next generation of human genomic research and commerce in a responsible fashion, scientists, lawyers, and regulators must address substantial new issues, including researchers’ duties with respect to clinically significant data, the boundary between genomic research and commerce and the practice of medicine, and the challenges to privacy presented by genomic data. This Article presents a new model for understanding and addressing these new challenges, at its core a “public genomics” premised on the idea that ethically, legally, and socially responsible genomics research requires openness, not privacy, as its organizing principle. Responsible public genomics combines the data contributed by informed and fully consenting information altruists and the research potential of rich datasets in a genomic commons that is freely and globally available. This Article examines the risks and benefits of this public genomics model in the context of an ambitious genetic research project currently under way - the Personal Genome Project - and (i) demonstrates that large scale genomic projects are desirable, (ii) evaluates the risks and challenges presented by public genomics research, and (iii) determines that the current legal and regulatory regimes restrict beneficial and responsible scientific inquiry while failing to protect participants. The Article concludes by proposing a modified normative and legal framework that embraces and enables a future of responsible public genomics.

Number of Pages in PDF File: 56

Keywords: Genomics, Genetics, IRB, regulation, personalized medicine, DNA, bioethics

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Date posted: September 15, 2009  

Suggested Citation

Conley, John M. and Vorhaus, Daniel B. and Doerr, Adam, Enabling Responsible Public Genomics. UNC Legal Studies Research Paper No. 1473924. Available at SSRN: http://ssrn.com/abstract=1473924 or http://dx.doi.org/10.2139/ssrn.1473924

Contact Information

John M. Conley (Contact Author)
University of North Carolina (UNC) at Chapel Hill - School of Law ( email )
Van Hecke-Wettach Hall, 160 Ridge Road
CB #3380
Chapel Hill, NC 27599-3380
United States
919-962-8502 (Phone)
Daniel B. Vorhaus
Robinson, Bradshaw & Hinson, P.A. ( email )
101 North Tryon St.
Suite 1900
Charlotte, NC 28246
United States
Adam Doerr
Robinson, Bradshaw & Hinson, P.A. ( email )
101 North Tryon St.
Suite 1900
Charlotte, NC 28246
United States
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