Researcher practices on returning genetic research results.
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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.
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Published Version (Please cite this version)10.1089/gtmb.2010.0066
Publication InfoHaga, Susanne B; Heaney, C; Lucas, J; & Tindall, G (2010). Researcher practices on returning genetic research results. Genet Test Mol Biomarkers, 14(6). pp. 821-827. 10.1089/gtmb.2010.0066. Retrieved from https://hdl.handle.net/10161/3319.
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Associate Professor in Medicine
My research interests focus on issues affecting the translation of genomics to clinical practice. Specifically, I have a strong interest in education, with each of my research projects involving some component of professional, public or patient education, including development of educational materials about genomic research in general, pharmacogenetic testing, and communicating genetic test results, in addition to undergraduate teaching in genetics/genomics, ethics, and policy.A