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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Disclosing Individual CDKN2A Research Results to Melanoma Survivors: Interest, Impact, and Demands on Researchers Christensen, Kurt D; Roberts, J Scott; Shalowitz, David I; Everett, Jessica N; Kim, Scott Y H; Raskin, Leon; Gruber, Stephen B (2011-03)Whether to return individual research results from cancer genetics studies is widely debated, but little is known about how participants respond to results disclosure or about its time and cost burdens on investigators.