Population-based biobank participants' preferences for receiving genetic test results.
Abstract
There are ongoing debates on issues relating to returning individual research results
(IRRs) and incidental findings (IFs) generated by genetic research in population-based
biobanks. To understand how to appropriately return genetic results from biobank studies,
we surveyed preferences for returning IRRs and IFs among participants of the Tohoku
Medical Megabank Project (TMM). We mailed a questionnaire to individuals enrolled
in the TMM cohort study (Group 1; n=1031) and a group of Tohoku region residents (Group
2; n=2314). The respondents were required to be over 20 years of age. Nearly 90% of
Group 1 participants and over 80% of Group 2 participants expressed a preference for
receiving their genetic test results. Furthermore, over 60% of both groups preferred
to receive their genetic results 'from a genetic specialist.' A logistic regression
analysis revealed that engaging in 'health-conscious behaviors' (such as regular physical
activity, having a healthy diet, intentionally reducing alcohol intake and/or smoking
and so on) was significant, positively associated with preferring to receive their
genetic test results (odds ratio=2.397 (Group 1) and 1.897 (Group 2)). Our findings
provided useful information and predictors regarding the return of IRRs and IFs in
a population-based biobank.
Type
Journal articleSubject
HumansIncidental Findings
Cohort Studies
Cross-Sectional Studies
Communication
Disclosure
Adult
Aged
Aged, 80 and over
Middle Aged
Biological Specimen Banks
Japan
Female
Male
Young Adult
Genetic Testing
Patient Preference
Surveys and Questionnaires
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https://hdl.handle.net/10161/17548Published Version (Please cite this version)
10.1038/jhg.2017.81Publication Info
Yamamoto, Kayono; Hachiya, Tsuyoshi; Fukushima, Akimune; Nakaya, Naoki; Okayama, Akira;
Tanno, Kozo; ... Shimizu, Atsushi (2017). Population-based biobank participants' preferences for receiving genetic test results.
Journal of human genetics, 62(12). pp. 1037-1048. 10.1038/jhg.2017.81. Retrieved from https://hdl.handle.net/10161/17548.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
Tomoharu Tokutomi
Visiting Research Scholar in the Department of Medicine

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