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

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.

Current status of non‐invasive prenatal testing in Japan

“…The results after 1 year of genetic counseling in Japan, obtained from surveys on the awareness of genetic counseling for pregnant women, have been summarized and reported . Genetic counseling was conducted before and after NIPT, and a survey was conducted for these sessions.…”

“…The results after 1 year of genetic counseling in Japan, obtained from surveys on the awareness of genetic counseling for pregnant women, have been summarized and reported. 32 Genetic counseling was conducted before and after NIPT, and a survey was conducted for these sessions. A total of 7292 people were analyzed, and 94% of the pregnant women surveyed expressed a high degree of satisfaction with the genetic counseling they experienced.…”

Qualitative investigation of the factors that generate ambivalent feelings in women who give birth after receiving negative results from non-invasive prenatal testing

“…The survey was in two parts: (i) pre-and immediately after the NIPT test, from April 2013 to March 2014 and (ii) a year-after the NIPT test, from April 2014 to March 2015. We have already reported on part (i) [11], and the present study is for part (ii). A yearafter research was conducted by a mail-in survey to determine whether the assessment of the NIPT and genetic counseling was changed after the test and one year after.…”

“…Because the responses in the first year after the questionnaire were anonymous, and it was impossible to obtain the background data, the personal background of the respondents was unknown; however, the available necessary background information of the respondents who underwent NIPT was shown in the previous study [11] of 7740 women, whereas the present study was limited to those who received negative NIPT results among the 7740 women, and therefore, the background data were not same.…”

Update on noninvasive prenatal testing: A review based on current worldwide research

“…The results from 7292 respondents were reported. 56 Genetic counseling was provided before testing and upon reporting the test results and was conducted by a clinical geneticist or a certified genetic counselor specializing in outpatient genetic counseling. A survey assessing the pregnant women's satisfaction in terms of the time spent on genetic counseling regarding NIPT and the amount of information provided, showed that satisfaction increased with time up to, but not including, 20 min, and remained more or less constant over the 20 min mark.…”