A survey on awareness of genetic counseling for non-invasive prenatal testing: The first year experience in Japan

Junko Yotsumoto, Akihiko Sekizawa, Nobuhiro Suzumori, Takahiro Yamada, Osamu Samura, Miyuki Nishiyama, Kiyonori Miura, Hideaki Sawai, Jun Murotsuki, Michihiro Kitagawa, Yoshimasa Kamei, Hideaki Masuzaki, Fumiki Hirahara, Toshiaki Endo, Akimune Fukushima, Akira Namba, Hisao Osada, Yasuyo Kasai, Atsushi Watanabe, Yukiko KatagiriNaoki Takeshita, Masaki Ogawa, Takashi Okai, Shunichiro Izumi, Haruka Hamanoue, Mayuko Inuzuka, Kazufumi Haino, Naoki Hamajima, Haruki Nishizawa, Yoko Okamoto, Hiroaki Nakamura, Takeshi Kanegawa, Jun Yoshimatsu, Shinya Tairaku, Katsuhiko Naruse, Hisashi Masuyama, Maki Hyodo, Takashi Kaji, Kazuhisa Maeda, Keiichi Matsubara, Masanobu Ogawa, Toshiyuki Yoshizato, Takashi Ohba, Yukie Kawano, Haruhiko Sago

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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.

Original languageEnglish
Pages (from-to)995-1001
Number of pages7
JournalJournal of Human Genetics
Volume61
Issue number12
DOIs
Publication statusPublished - Dec 1 2016

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ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

Cite this

Yotsumoto, J., Sekizawa, A., Suzumori, N., Yamada, T., Samura, O., Nishiyama, M., Miura, K., Sawai, H., Murotsuki, J., Kitagawa, M., Kamei, Y., Masuzaki, H., Hirahara, F., Endo, T., Fukushima, A., Namba, A., Osada, H., Kasai, Y., Watanabe, A., ... Sago, H. (2016). A survey on awareness of genetic counseling for non-invasive prenatal testing: The first year experience in Japan. Journal of Human Genetics, 61(12), 995-1001. https://doi.org/10.1038/jhg.2016.96