Authors
Patrick Miller
Princeton University
Abstract
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
Keywords info:mesh/Genotype  info:mesh/Informed Consent  Humans   Data Collection   Disclosure   Genetic Research   Genotype   Patient Selection   Informed Consent   Ethics Committees, Research  info:mesh/Data Collection  info:mesh/Humans  info:mesh/Ethics Committees, Research  info:mesh/Patient Selection  info:mesh/Genetic Research  info:mesh/Disclosure
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