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Research Participants' Perspectives on Genotype-Driven Research Recruitment

Laura M. Beskow, Emily E. Namey, R. Jean Cadigan, Tracy Brazg, Julia Crouch, Gail E. Henderson, Marsha Michie, Daniel K. Nelson, Holly K. Tabor and Benjamin S. Wilfond
Journal of Empirical Research on Human Research Ethics: An International Journal
Vol. 6, No. 4 (December 2011), pp. 3-20
Published by: Sage Publications, Inc.
DOI: 10.1525/jer.2011.6.4.3
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Page Count: 18
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Research Participants' Perspectives on Genotype-Driven Research Recruitment
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Genotype-driven recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, “information is valuable,” and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally.

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