Returning individual research results: development of a cancer genetics education and risk communication protocol.
Roberts, J Scott
Shalowitz, David I
Christensen, Kurt D
Everett, Jessica N
Kim, Scott Y H
Gruber, Stephen B
Journal of empirical research on human research ethics : JERHRE 2010 Sep; 5(3): 17-30
The obligations of researchers to disclose clinically and/or personally significant individual research results are highly debated, but few empirical studies have addressed this topic. We describe the development of a protocol for returning research results to participants at one site of a multicenter study of the genetic epidemiology of melanoma. Protocol development involved numerous challenges: (1) deciding whether genotype results merited disclosure; (2) achieving an appropriate format for communicating results; (3) developing education materials; (4) deciding whether to retest samples for additional laboratory validation; (5) identifying and notifying selected participants; and (6) assessing the impact of disclosure. Our experience suggests potential obstacles depending on researcher resources and the design of the parent study, but offers a process by which researchers can responsibly return individual study results and evaluate the impact of disclosure.
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