From The Mainichi
June 9 2021
TOKYO — The Japanese government has decided to improve the provision of information on noninvasive prenatal genetic testing (NIPT), which examines pregnant women’s blood to determine the risk of chromosomal abnormalities in fetuses.
The decision has come about due to factors including births at advanced maternal ages driving up need for testing, but concern is growing among people with Down syndrome and their families that depending on how the information is conveyed, it could lead to “selection of life” practices and perpetuate prejudice.
“I hope that medical professionals and others around those (who have tested positive) will not impose their values on involved parties, but instead support them in their choice to give birth or not,” said Yukiko Yamagami, 40, a company employee in Saitama Prefecture raising her eldest daughter Nana, 4, who has Down syndrome.
Nana was the first child Yamagami conceived after receiving fertility treatment. She did not undergo NIPT, but an amniotic fluid test diagnosed Nana with Down syndrome. At the time, Yamagami and her husband agonized over whether to keep the fetus because they could not foresee how their daughter would grow up. Yamagami was 18 weeks pregnant, and had only three weeks to decide.
She visited families raising children with Down syndrome and went to her local city hall to ask about support systems. By getting a clear image of what her life would be like after giving birth, Yamagami’s vague, negative impression of Down syndrome changed, and she decided to go through with the pregnancy.
However, when she told her obstetrician-gynecologist that she wanted to give birth, they explained that most pregnant women carrying fetuses found to have disabilities choose abortion. She recalled, “It was frustrating to be spoken to in a way that made me feel like it was only natural not to have the child.” Since her birth, Nana has grown steadily, and Yamagami says she wants as many people as possible to know that these children live healthy lives.
At the same time, looking back on the time when she was forced to choose whether to have Nana, Yamagami said, “No matter what my decision, I wanted (my doctor) to support me until the end. My judgment as a parent could easily be swayed by my environment or things said around me. If I hadn’t been able to meet people with Down syndrome, I might have given up.”
NIPT was introduced in Japan in 2013. It analyzes a fetus’s DNA in the blood of their pregnant mother, and estimates the presence of three diseases: trisomy 21 (Down syndrome), trisomy 13, and trisomy 18 — in which the fetus has an additional chromosome. The test costs around 200,000 yen (about $1,820).
The Japan Society of Obstetrics and Gynecology (JSOG) enforces strict guidelines on introducing NIPT, including requiring that facilities be able to provide counseling to support expectant mothers’ decision-making.
The test has been implemented largely for pregnant women aged 35 or older. But the guidelines are only self-imposed by the JSOG, and there has since been a rapid increase in uncertified facilities conducting tests commercially without following guidelines.