@article{4ca7b6e8cca24db480a575b1d85f6e5f,
title = "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 {\^a} - from a genetic specialist.' A logistic regression analysis revealed that engaging in {\^a} - 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.",
author = "Kayono Yamamoto and Tsuyoshi Hachiya and Akimune Fukushima and Naoki Nakaya and Akira Okayama and Kozo Tanno and Fumie Aizawa and Tomoharu Tokutomi and Atsushi Hozawa and Atsushi Shimizu",
note = "Funding Information: We would like to thank the members of the Iwate TMM Organization of Iwate Medical University (IMM) and the TMM Organization of Tohoku University (ToMMo) for their encouragement and support. We are also deeply grateful to Ms Kei Kawana and Ms Fumiyo Nakayama, the office clerks in our department, for their assistance. We would also like to thank Ms Takako Hirano, the GMRC of IMM, for her help with data arrangement. We are grateful to Drs Yuh Shiwa, Ryohei Furukawa, Hideki Ohmomo, Ms Kanako Ono, Ms Naoe Suzuki, Ms Atsuko Sugawara, Ms Fumiko Okano, Ms Shyuko Chiba and Ms Mugiho Segawa for their valuable suggestions, which have helped us improve the quality of the research questionnaire. We are also grateful to Professor Hiroshi Kawame and Professor Fuji Nagami for their helpful discussions. We would also like to thank the study participants, who had the most critical role in this research. Our work was supported in part by grants from the TMM Project (Special Account for Reconstruction from the Great East Japan Earthquake) of MEXT and AMED. Furthermore, the funders had no role in the study design, data collection and analysis; decision to publish; or preparation of the manuscript. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Ministry of Education, Culture, Sports, Science and Technology (MEXT) and the Japan Agency for Medical Research and Development (AMED).",
year = "2017",
month = dec,
day = "1",
doi = "10.1038/jhg.2017.81",
language = "English",
volume = "62",
pages = "1037--1048",
journal = "Journal of Human Genetics",
issn = "1434-5161",
publisher = "Nature Publishing Group",
number = "12",
}