Returning individual research results: development of a cancer genetics education and risk communication protocol.

ABSTRACT: 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

SUBMITTER: Roberts JS 

PROVIDER: S-EPMC3159194 | biostudies-literature | 2010 Sep

REPOSITORIES: biostudies-literature