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The Discourse of DNA: What Research Subjects Say About Participating (or Not) in a Genomic Biobank

56 Pages Posted: 18 Feb 2010  

John M. Conley

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

R. Jean Cadigan

University of North Carolina (UNC) at Chapel Hill - Department of Social Medicine

Arlene Davis

University of North Carolina (UNC) at Chapel Hill - Department of Social Medicine

Allison W. Dobson

University of North Carolina at Chapel Hill - Center for Genomics and Society

Erin Edwards

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

Wendell Fortson

University of North Carolina (UNC) at Chapel Hill

Robert Mitchell

Duke University

Abstract

This paper reports the results of a qualitative linguistic analysis of interviews with persons who were asked to contribute DNA samples to a genomic biobank. We compare this folk discourse of biobanking to the expert discourse reflected in an extensive biomedical literature. Our most significant finding concerns the social nature of giving informed consent: whereas medical research practice treats it as an event, our subjects talk about it as a discursive process. Our subjects also expound fascinating folk theories of genetics and discuss their views of the sample contribution itself, revealing some remarkable folk-legal theories of that transaction.

Suggested Citation

Conley, John M. and Cadigan, R. Jean and Davis, Arlene and Dobson, Allison W. and Edwards, Erin and Fortson, Wendell and Mitchell, Robert, The Discourse of DNA: What Research Subjects Say About Participating (or Not) in a Genomic Biobank. UNC Legal Studies Research Paper No. 1554744. Available at SSRN: https://ssrn.com/abstract=1554744 or http://dx.doi.org/10.2139/ssrn.1554744

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)

R. Jean Cadigan

University of North Carolina (UNC) at Chapel Hill - Department of Social Medicine

Chapel Hill, NC 27599
United States

Arlene Davis

University of North Carolina (UNC) at Chapel Hill - Department of Social Medicine ( email )

Chapel Hill, NC 27599
United States

Allison W. Dobson

University of North Carolina at Chapel Hill - Center for Genomics and Society ( email )

102 Ridge Road
Chapel Hill, NC NC 27514
United States

Erin Edwards

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

Wendell Fortson

University of North Carolina (UNC) at Chapel Hill ( email )

102 Ridge Road
Chapel Hill, NC NC 27514
United States

Robert Mitchell

Duke University ( email )

100 Fuqua Drive
Durham, NC 27708-0204
United States

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