Experiences and attitudes of genome investigators regarding return of individual genetic test results.

ABSTRACT:

Purpose

Whether and how to return individual genetic results to study participants is among the most contentious policy issues in contemporary genomic research.

Methods

We surveyed corresponding authors of genome-wide association studies, identified through the National Human Genome Research Institute's Catalog of Published Genome-Wide Association Studies, to describe the experiences and attitudes of these stakeholders.

Results

Of 357 corresponding authors, 200 (56%) responded. One hundred twenty-six (63%) had been responsible for primary data and sample collection, whereas 74 (37%) had performed secondary analyses. Only 7 (4%) had returned individual results within their index genome-wide association studies. Most (69%) believed that return of results to individual p

SUBMITTER: Ramoni RB 

PROVIDER: S-EPMC4143384 | biostudies-literature | 2013 Nov

REPOSITORIES: biostudies-literature