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Population-based biobank participants' preferences for receiving genetic test results.

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Date
2017-12
Authors
Yamamoto, Kayono
Hachiya, Tsuyoshi
Fukushima, Akimune
Nakaya, Naoki
Okayama, Akira
Tanno, Kozo
Aizawa, Fumie
Tokutomi, Tomoharu
Hozawa, Atsushi
Shimizu, Atsushi
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(10 total)
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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 article
Subject
Humans
Incidental 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
Permalink
https://hdl.handle.net/10161/17548
Published Version (Please cite this version)
10.1038/jhg.2017.81
Publication 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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Scholars@Duke

Tomoharu Tokutomi

Visiting Research Scholar in the Department of Medicine
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