National / Media | MEDIA MIX

News outlets debate the ethics behind prenatal testing

by Philip Brasor

Contributing Writer

Last month, the Diet enacted legislation to pay ¥3.2 million to each person who was sterilized as part of the Eugenic Protection Law passed in 1948. Prime Minister Shinzo Abe has also said he will apologize to the roughly 25,000 victims on behalf of the state. Many of them feel the amount of money is insufficient — lawsuits demanding more are ongoing — and that the apology is too little too late. The wording of the compensation bill is also problematic, since it isn’t specific about the government’s responsibility.

The victims’ ire seems justified in that the government has dragged its feet over the sterilization issue for more than 20 years, prompting some people to believe that the authorities are not really sorry for having subjected to sterilization people deemed “inferior” by reason of intellectual disability, mental illness or hereditary disorder. Even after the eugenics legislation was changed in 1996, the government defended its actions by saying that sterilizations were conducted in accordance with the law.

Coincidentally, news outlets are now debating the ethics of a prenatal testing method that is easier to carry out than prior methods. In the past, pregnant women who wanted to find out whether there were any health or genetic problems with their fetuses had to undergo amniocentesis, which is inherently risky for both the baby and the mother. The newer method, introduced in Japan in 2013, is a blood test that comes with little risk.

In March, the Japan Society of Obstetrics and Gynecology (JSOG) decided to allow doctors with private practices to conduct the blood tests. So far, only certain hospitals were authorized to administer them. In a sense, the JSOG is facing up to reality since many women were already receiving the blood test at unauthorized clinics. By expanding permission, the JSOG is hoping to also expand counseling for women who undergo the test. According to data provided by authorized hospitals, as many as 90 percent of women who test positive for chromosome abnormalities choose to abort their fetuses.

Shiro Namekata attempted to explain the matter in the Asahi Shimbun on April 14, saying that journalists who attended a Japan Association of Obstetricians and Gynecologists media symposium last year were taken aback by the reported abortion rate. The tests were positive for three genetic abnormalities — trisomy 13, 18 or 21, which describe an extra chromosome on the DNA strand. Children with trisomy 13 and 18 often die not long after they are born. Children with trisomy 21 are born with Down syndrome, and nowadays many can live fairly normal lives into their 60s thanks to medical advances and improved living environments.

Professor Akihiko Sekizawa of Showa University told Namekata that parents whose children test positive for trisomy 13 or 18 may allow them to be born thinking they will “make an effort” so that the children can “complete their lives.”

According to Namekata, since children with Down syndrome can live much longer, parents of trisomy 21 babies more likely choose abortion, worrying that it could be difficult to take care of their children when they are older.

An April 15 news report on Abema TV looked at several couples who ended up with positive test results. One mother said she had decided beforehand that she would give birth regardless of the results. However, her husband wanted to terminate the pregnancy after the results were positive for Down syndrome. In such cases, amniocentesis is carried out to confirm the results, meaning more time is needed. In this couple’s case, the final results came back in the 19th week of pregnancy. In Japan, abortions can only be carried out until the 22nd week, so the couple had to decide right away and the wife managed to change her partner’s mind.

Another couple profiled chose to abort their fetus after it tested positive for Down syndrome and the wife, at least, has since had misgivings. Another couple who went through a similar process ended up getting a divorce, with the wife saying that she couldn’t live with her husband after he displayed unalloyed relief when the fetus was cremated.

The report raised a question commonly asked in media coverage: Is the relative convenience of the prenatal blood test increasing the abortion rate? It’s a claim that’s difficult to prove given that abortion is basically illegal in Japan and can only be carried out for reasons having to do with the mother’s health or economic circumstances. Nevertheless, it gives rise to a corollary question: Are doctors recommending the blood test, which is not covered by health insurance, unnecessarily?

Perhaps a more significant question is how far has society progressed from the idea that people with disabilities are an insupportabl burden. A documentary that opened earlier this year, “Michikusa,” showed how people with severe mental disabilities could live on their own if the social environment was accepting.

This idea was one of the subtexts of a biweekly column by pediatric surgeon Tadashi Matsunaga in the Yomiuri Shimbun that ended in April. Looking back on the column in a recent interview, Matsunaga discussed babies with disabilities and the decisions their parents made. He was intrigued and sometimes dismayed by the public reaction eto his writing. Many people are negative about allowing children with disabilities into the world. They say that in nature these children would not survive, and spending tax money to support them is a drain on resources.

Facilities unauthorized to administer the blood test tend to offer it more cheaply, which is why there is usually no counseling involved. The decision to abort a child that could be born with a disability is a personal one, but Matsunaga’s remark suggests there has not been enough public discussion of the matter.

“A disability doesn’t mean the person is inferior or necessarily unable to do something,” Matsunaga says. “It just indicates that there are social barriers in place for this person. Disabilities are a nondisabled person’s issue, and knowing that is the first step toward understanding.”