Journal
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
Volume 6, Issue 2, Pages 57-70Publisher
SAGE PUBLICATIONS INC
DOI: 10.1525/jer.2011.6.2.57
Keywords
genetic research; genetic sample donation; genetic variation research; colorectal cancer; tissue samples
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HUMAN GENOME RESEARCH DEPENDS upon participants who donate genetic samples, but few studies have explored in depth the motivations of genetic research donors. This mixed methods study examines telephone interviews with 752 sample donors in a U.S. genetic epidemiology study investigating colorectal cancer. Quantitative and qualitative results indicate that most participants wanted to help society, and that many also wanted information about their own health, even though such information was not promised. Qualitative analysis reveals that donors believed their samples contributed to a scientific common good; imagined samples as information rather than tissues; and often blurred distinctions between research and diagnostic testing of samples. Differences between African American and White perspectives were distinct from educational and other possible explanatory factors.
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