Researcher practices on returning genetic research results.
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.
Type
Journal articleSubject
Access to InformationData Collection
Genetic Research
Genetic Testing
Humans
Professional Practice
Research Personnel
United States
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https://hdl.handle.net/10161/3319Published Version (Please cite this version)
10.1089/gtmb.2010.0066Publication Info
Heaney, Christopher; Tindall, Genevieve; Lucas, Joe; & Haga, Susanne B (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.This is constructed from limited available data and may be imprecise. To cite this
article, please review & use the official citation provided by the journal.
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Show full item recordScholars@Duke
Susanne B Haga
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
Joseph E. Lucas
Associate Research Professor in the Social Science Research Institute
This author no longer has a Scholars@Duke profile, so the information shown here reflects
their Duke status at the time this item was deposited.
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