Researcher practices on returning genetic research results.

Heaney, Christopher

Tindall, Genevieve

Lucas, Joe

Haga, Susanne B

United States

2011-04-15T16:46:26Z

2010-12

BACKGROUND/AIMS: as genetic and genomic research proliferates, debate has ensued about returning results to participants. In addition to consideration of the benefits and harms to participants, researchers must also consider the logistical and financial feasibility of returning research results. However, little data exist of actual researcher practices. METHODS: we conducted an online survey of 446 corresponding authors of genetic/genomic studies conducted in the United States and published in 2006-2007 to assess the frequency with which they considered, offered to, or actually returned research results, what factors influenced these decisions, and the method of communicating results. RESULTS: the response rate was 24% (105/446). Fifty-four percent of respondents considered the issue of returning research results to participants, 28% offered to return individual research results, and 24% actually returned individual research results. Of those who considered the issue of returning research results during the study planning phase, the most common factors considered were whether research results were deemed clinically useful (18%) and respect for participants (13%). Researchers who had a medical degree and conducted studies on children were significantly more likely to offer to return or actually return individual results compared to those with a Ph.D. only. CONCLUSIONS: we speculate that issues associated with clinical validity and respect for participants dominated concerns of time and expense given the prominent and continuing ethical debates surrounding genetics and genomics research. The substantial number of researchers who did not consider returning research results suggests that researchers and institutional review boards need to devote more attention to a topic about which research participants are interested.

Version of Record

http://www.ncbi.nlm.nih.gov/pubmed/20939736

1945-0257

https://hdl.handle.net/10161/3319

eng

en_US

Mary Ann Liebert Inc

Genet Test Mol Biomarkers

10.1089/gtmb.2010.0066

Genetic Testing and Molecular Biomarkers

Access to Information

Data Collection

Genetic Research

Genetic Testing

Humans

Professional Practice

Research Personnel

United States

Researcher practices on returning genetic research results.

Journal article

Haga, Susanne B|0000-0001-8817-7406

2010-12-0

6

14

http://www.ncbi.nlm.nih.gov/pubmed/20939736

821

827

6

Basic Science Departments

Biostatistics & Bioinformatics

Clinical Science Departments

Duke

Duke Science & Society

Initiatives

Institutes and Provost's Academic Units

Medicine

Medicine, General Internal Medicine

Sanford School of Public Policy

Sanford School of Public Policy - Secondary Group

School of Medicine

Social Science Research Institute

University Institutes and Centers

Published

14