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A comparison of genome cohort participants' genetic knowledge and preferences to receive genetic results before and after a genetics workshop.

dc.contributor.author Tokutomi, Tomoharu
dc.contributor.author Yamamoto, Kayono
dc.contributor.author Shimizu, Atsushi
dc.contributor.author Aizawa, Fumie
dc.contributor.author Kawame, Hiroshi
dc.contributor.author Fukushima, Akimune
dc.date.accessioned 2018-10-01T13:56:02Z
dc.date.available 2018-10-01T13:56:02Z
dc.date.issued 2018-09-05
dc.identifier.issn 1434-5161
dc.identifier.issn 1435-232X
dc.identifier.uri https://hdl.handle.net/10161/17546
dc.description.abstract Several biobanks have begun returning genetic results to individuals, making the development of public genetic literacy an urgent task for their effective use. No research exists regarding the effects of genetic education on biobank participants, so we conducted genetics workshops with specialists, and surveyed differences in the participants' (n = 112) preferences to receive their own genetic information by disease categories and their genetic knowledge using questionnaires before and after the workshops. Almost 90% of our participants were over 60 years old, which was similar to our previous preference research. The preference to receive five of the six categories of genetic information (lifestyle diseases, pharmacogenetics, adult-onset non-clinically actionable diseases, non-clinically actionable multifactorial diseases, and all genetic information) was slightly but significantly decreased after the genetics workshop. More participants preferred to receive genetic results regarding lifestyle diseases, pharmacogenetics, and adult-onset clinically actionable diseases after the workshop, while less participants preferred to receive information regarding adult-onset non-clinically actionable diseases, non-clinically actionable multifactorial diseases, and all genetic information. Total genetic knowledge scores significantly increased after the workshop (before: 11.89, after: 13.30, p < 0.001). Our findings suggest that genetics workshops are useful to improve the genetic literacy of genome cohort participants.
dc.language eng
dc.relation.ispartof Journal of human genetics
dc.relation.isversionof 10.1038/s10038-018-0494-z
dc.title A comparison of genome cohort participants' genetic knowledge and preferences to receive genetic results before and after a genetics workshop.
dc.type Journal article
dc.date.updated 2018-10-01T13:56:01Z
pubs.organisational-group School of Medicine
pubs.organisational-group Duke
pubs.publication-status Published


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