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The Meaning of Genetic Research Results: Reflections from Individuals With and Without a Known Genetic Disorder

R. Jean Cadigan, Marsha Michie, Gail Henderson, Arlene M. Davis and Laura M. Beskow
Journal of Empirical Research on Human Research Ethics: An International Journal
Vol. 6, No. 4 (December 2011), pp. 30-40
Published by: Sage Publications, Inc.
DOI: 10.1525/jer.2011.6.4.30
Stable URL: http://www.jstor.org/stable/10.1525/jer.2011.6.4.30
Page Count: 11
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The Meaning of Genetic Research Results: Reflections from Individuals With and Without a Known Genetic Disorder
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Abstract

In the debate about whether to return individual genetic results to research participants, consideration of the nature of results has taken precedence over contextual factors associated with different study designs and populations. We conducted in-depth interviews with 24 individuals who participated in a genotype-driven study of cystic fibrosis: 9 of the individuals had cystic fibrosis, 15 had participated as healthy volunteers, and all had gene variants of interest to the researchers. These interviews revealed that the two groups had different ideas about the meaningfulness of genetic results. Our findings point to the importance of understanding research context, such as participants' relationship with the researcher and whether they have the disease condition under study, when considering whether to return individual results.

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