Research participants' perspectives on genotype-driven research recruitment.


Journal Article

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.

Full Text

Cited Authors

  • Beskow, LM; Namey, EE; Cadigan, RJ; Brazg, T; Crouch, J; Henderson, GE; Michie, M; Nelson, DK; Tabor, HK; Wilfond, BS

Published Date

  • December 2011

Published In

Volume / Issue

  • 6 / 4

Start / End Page

  • 3 - 20

PubMed ID

  • 22228056

Pubmed Central ID

  • 22228056

Electronic International Standard Serial Number (EISSN)

  • 1556-2654

International Standard Serial Number (ISSN)

  • 1556-2646

Digital Object Identifier (DOI)

  • 10.1525/jer.2011.6.4.3


  • eng