Abstract
The purpose of this study is to summarize the results from a survey on awareness of genetic counseling for pregnant women who wish to receive non-invasive prenatal testing (NIPT) in Japan. As a component of a clinical study by the Japan NIPT Consortium, genetic counseling was conducted for women who wished to receive NIPT, and a questionnaire concerning both NIPT and genetic counseling was given twice: once after pre-test counseling and again when test results were reported. The responses of 7292 women were analyzed. They expressed high satisfaction with the genetic counseling system of the NIPT Consortium (94%). The number of respondents who indicated that genetic counseling is necessary for NIPT increased over time. Furthermore, they highly valued genetic counseling provided by skilled clinicians, such as clinical geneticists or genetic counselors. The vast majority (90%) responded that there was sufficient opportunity to consider the test ahead of time. Meanwhile, women who received positive test results had a poor opinion and expressed a low-degree satisfaction. We confirmed that the pre-test genetic counseling that we conducted creates an opportunity for pregnant women to sufficiently consider prenatal testing, promotes its understanding and has possibilities to effectively facilitate informed decision making after adequate consideration. A more careful and thorough approach is considered to be necessary for women who received positive test results.
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Acknowledgements
We thank all clinical geneticists and genetic counselors who participated in this study for making this study possible. We thank all the respondents participating in this study. AS and HS were supported by the Grant of National Center for Child Health and Development 24-3, Japan.
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STUDY GROUP MEMBERS OF JAPAN NIPT CONSORTIUM Rina Akaishi, Takashi Kojima, Yuka Shibata (Hokkaido University Graduate School of Medicine), Seiji Wada, Aiko Sasaki (National Center for Child Health and Development), Nahoko Shirato, Keiko Miyagami, Tatsuko Hirose, Atsuko Saito (Showa University), Tomohiro Tanemoto, Madoka Horiya (The Jikei University), Akinori Miki, Machiko Kimura, Hiroko Nakagami, Taki Kamigaki (Saitama Medical University Hospital), Yuri Hasegawa, Shoko Miura, Noriko Sasaki (Nagasaki University), Mako Ueda, Mariko Ushioda, Chiho Okada, Hiroyuki Tanaka, Mina Morii-Kashima (Hyogo College of Medicine), Naomi Nishikawa (Nagoya City West Medical Center), Kei Hayata (Okayama University Graduate School of Medicine), Hanae Satano (Hiroshima University), Michiko Watanabe, Kaori Arima (Japanese Red Cross Medical Center), Kyoko Kumagai, Eri Takeda, Kumiko Oseto (Nagoya City University), Wakana Abe (Oita University Hospital), Motoko Sasaki (Nippon Medical School Hospital), Tomoo Hirabuki (Odawara City Hospital), Haruya Saji (Fujisawa City Hospital), Hiromi Nagase, Akihito Mochizuki, Hiroshi Ishikawa (Kanagawa Children’s Medical Center), Kimiko Enomoto (Yokohama City University Medical Center), Kaori Sawai (Yokohama Municipal Citizen’s Hospital), Rie Suzuki (National Hospital Organization Yokohama Medical Center), Yoshinobu Sugo, Mari Shinoda, (Yokohama City University Hospital), Miki Tanoshita, Kauzmi Takahashi (Tokai University School of Medicine), Yuko Ohnuki, Hiromi Moriya, Naoko Harada, Hiroe Onaka, Ryoko Hikima, Akinobu Kuroki, Norimasa Sawaguchi (Tokai University Hospital).
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Yotsumoto, J., Sekizawa, A., Suzumori, N. et al. A survey on awareness of genetic counseling for non-invasive prenatal testing: the first year experience in Japan. J Hum Genet 61, 995–1001 (2016). https://doi.org/10.1038/jhg.2016.96
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DOI: https://doi.org/10.1038/jhg.2016.96
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