Self-perception of people with Down Syndrome (DS) was originally studied in the United States in 2011; this study indicated that 99% of people with DS are happy with their lives. In this study, we investigated self-perceptions of people with DS in Japan and compared the results to the previous study made in the United States. The participants (n = 300) were 12 years old or older and members of Japan Down Syndrome Society (JDS). The questionnaire was collected between 30 October 2015 and 26 November 2015. Of 96(32%) responses, 76 (97%) agreed they are happy with their lives. We found that most people with DS in Japan also feel positive about themselves and their lives. Along with the start of Non-Invasive Prenatal Testing in Japan, DS draws an attention from Japanese people because maternal age has been increasing. This has resulted in the growth of the number of prenatal tests marketed in Japan. Therefore, we expect our results to be relevant to genetic counseling for the couples considering prenatal tests or parents raising their children with DS so that they have a clearer image about life with DS and can better visualize their life plans.
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We are grateful to Dr. Brian Skotko for his collaboration on this entire work. We would also like to thank the members of the Japan Down Syndrome Society and their families for answering our survey and for their support of our research.
Conflict of interest
The authors declare that they have no conflict of interest.
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Wakai, M., Takahashi, R., Higashigawa, S. et al. Self-perceptions from people with Down syndrome in Japan. J Hum Genet 63, 669–672 (2018). https://doi.org/10.1038/s10038-018-0412-4