Format

Send to

Choose Destination
J Empir Res Hum Res Ethics. 2010 Sep;5(3):17-30. doi: 10.1525/jer.2010.5.3.17.

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

Author information

1
Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI 48109-2029, USA. jscottr@umich.edu

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 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.

PMID:
20831418
PMCID:
PMC3159194
DOI:
10.1525/jer.2010.5.3.17
[Indexed for MEDLINE]
Free PMC Article

Supplemental Content

Full text links

Icon for Atypon Icon for PubMed Central
Loading ...
Support Center