Research participants' perspectives on genotype-driven research recruitment.
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.
Duke Institute for Genome Sciences & Policy, Duke University, Durham, NC 27708, USA. laura.beskow@duke.edu
Laura M
LM
Beskow
Emily E
EE
Namey
R Jean
RJ
Cadigan
Tracy
T
Brazg
Julia
J
Crouch
Gail E
GE
Henderson
Marsha
M
Michie
Daniel K
DK
Nelson
Holly K
HK
Tabor
Benjamin S
BS
Wilfond
D000328:Adult; D000368:Aged; D001290:Attitude; D030881:Disclosure / Q000941:ethics*; D033002:Duty to Recontact / Q000941:ethics*; D005260:Female; D036281:Genetic Research / Q000941:ethics*; D005838:Genotype; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D018579:Patient Selection / Q000941:ethics*; D035842:Research Subjects; D055815:Young Adult