Feature Article
IRB Chairs' Perspectives on Genotype-Driven Research Recruitment
Laura M. Beskow, Emily E. Namey, Patrick R. Miller, Daniel K. Nelson, and Alexandra Cooper
Recruiting
research participants based on genetic information generated about them in a
prior study is a potentially powerful way to study the functional significance
of human genetic variation, but it also presents ethical challenges. To inform
policy development on this issue, we conducted a survey of U.S. institutional
review board chairs concerning the acceptability of recontacting genetic
research participants about additional research and their views on the
disclosure of individual genetic results as part of recruitment. Our findings
suggest there is unlikely to be a “one-size-fits-all” solution, but rather
several ethically acceptable approaches to genotype-driven recruitment,
depending on context. Disclosures made during the consent process for the
original study and the clinical validity of the results are key considerations.
Researchers must be prepared to communicate and answer questions in clear lay
language about what is known and not known regarding the role of genetics in
their proposed area of research.
Key words/concepts: research
recruitment, informed consent, disclosure of research results, genetic
research, institutional review boards
Recruiting
research participants based on genetic information generated about them in a
prior study is a potentially powerful way to study the functional significance
of human genetic variation, but it also presents ethical challenges. To inform
policy development on this issue, we conducted a survey of U.S. institutional
review board chairs concerning the acceptability of recontacting genetic
research participants about additional research and their views on the
disclosure of individual genetic results as part of recruitment. Our findings
suggest there is unlikely to be a “one-size-fits-all” solution, but rather
several ethically acceptable approaches to genotype-driven recruitment,
depending on context. Disclosures made during the consent process for the
original study and the clinical validity of the results are key considerations.
Researchers must be prepared to communicate and answer questions in clear lay
language about what is known and not known regarding the role of genetics in
their proposed area of research.
Key words/concepts: research
recruitment, informed consent, disclosure of research results, genetic
research, institutional review boards
Laura M. Beskow, Emily E. Namey, Patrick R. Miller, Daniel K. Nelson, and Alexandra Cooper, "IRB Chairs' Perspectives on Genotype-Driven Research Recruitment," IRB: Ethics & Human Research 34, no. 3 (2012): 1-10.
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