Show simple item record Heaney, C Tindall, G Lucas, J Haga, SB
dc.coverage.spatial United States 2011-04-15T16:46:26Z 2010-12
dc.identifier.citation Genet Test Mol Biomarkers, 2010, 14 (6), pp. 821 - 827
dc.description.abstract 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.
dc.format.extent 821 - 827
dc.language eng
dc.language.iso en_US en_US
dc.relation.ispartof Genet Test Mol Biomarkers
dc.relation.isversionof 10.1089/gtmb.2010.0066
dc.subject Access to Information
dc.subject Data Collection
dc.subject Genetic Research
dc.subject Genetic Testing
dc.subject Humans
dc.subject Professional Practice
dc.subject Research Personnel
dc.subject United States
dc.title Researcher practices on returning genetic research results.
dc.type Journal Article
dc.description.version Version of Record en_US 2010-12-0 en_US
duke.description.endpage 827 en_US
duke.description.issue 6 en_US
duke.description.startpage 821 en_US
duke.description.volume 14 en_US
dc.relation.journal Genetic Testing and Molecular Biomarkers en_US
pubs.issue 6
pubs.organisational-group /Duke
pubs.organisational-group /Duke/Institutes and Provost's Academic Units
pubs.organisational-group /Duke/Institutes and Provost's Academic Units/Initiatives
pubs.organisational-group /Duke/Institutes and Provost's Academic Units/Initiatives/Duke Science & Society
pubs.organisational-group /Duke/Institutes and Provost's Academic Units/University Institutes and Centers
pubs.organisational-group /Duke/Institutes and Provost's Academic Units/University Institutes and Centers/Social Science Research Institute
pubs.organisational-group /Duke/Sanford School of Public Policy
pubs.organisational-group /Duke/Sanford School of Public Policy/Sanford School of Public Policy - Secondary Group
pubs.organisational-group /Duke/School of Medicine
pubs.organisational-group /Duke/School of Medicine/Basic Science Departments
pubs.organisational-group /Duke/School of Medicine/Basic Science Departments/Biostatistics & Bioinformatics
pubs.organisational-group /Duke/School of Medicine/Clinical Science Departments
pubs.organisational-group /Duke/School of Medicine/Clinical Science Departments/Medicine
pubs.organisational-group /Duke/School of Medicine/Clinical Science Departments/Medicine/Medicine, General Internal Medicine
pubs.publication-status Published
pubs.volume 14
dc.identifier.eissn 1945-0257

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