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

View 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.

Investigators
Abbreviation
J Empir Res Hum Res Ethics
Publication Date
1999-11-30
Volume
5
Issue
3
Page Numbers
17-30
Pubmed ID
20831418
Medium
Print
Full Title
Returning individual research results: development of a cancer genetics education and risk communication protocol.
Authors
Roberts JS, Shalowitz DI, Christensen KD, Everett JN, Kim SY, Raskin L, Gruber SB