Disability Japan Pre-Natal Testing

Deregulation for prenatal genetic screening in Japan needs further scrutiny [Asahi Shimbun Editorial]

“This raises the grave concern that undergoing such screenings could become “a matter of course” and may well result in “overly casual” decisions concerning the fate of fetuses with irregularities.”

From The Asahi Shimbun

March 5th 2019

The Japan Society of Obstetrics and Gynecology (JSOG) announced a deregulatory measure on March 2 that aims to significantly increase the availability of prenatal genetic screenings of fetuses for Down syndrome and other disorders.

This raises the grave concern that undergoing such screenings could become “a matter of course” and may well result in “overly casual” decisions concerning the fate of fetuses with irregularities.

At present, non-invasive prenatal genetic testing (NIPT) can be conducted only at 92 JSOG-approved university hospitals and general hospitals nationwide with outpatient services specializing in genetics.

The deregulation will enable other facilities to conduct NIPT if they meet such requirements as being permanently staffed by JSOG-trained ob-gyn specialists.

But how capable are small-scale clinics of offering sufficient information and counseling to pregnant women and their families, and answering their questions or addressing their concerns?

And if a fetus tests positive for Down syndrome or other disorders, will every clinic be able to handle the situation appropriately?

JSOG says it is sticking to its current policy of not requiring doctors to actively promote NIPT and reminding them not to unnecessarily encourage the procedure to their patients.

However, since JSOG-approved facilities are free to advertise that status, their revenues will grow with every test they conduct. Is there any guarantee that they will never try to solicit business?

In the background of the deregulation is the presence of facilities, said to number more than 10, that conduct NIPT in disregard of JSOG’s rules. The screenings are, in principle, meant for women aged 35 and older, and tests are limited to only three types of chromosomal aberration.

Also, some of the facilities are known to emphasize the low screening fees they charge.

But little is known about what really goes on at these facilities, such as possible problems with how they have dealt with their clients and their families.

And since it is doubtful that the deregulation will reduce the number of people going to unauthorized screening facilities, we believe JSOG should accurately assess the situation and strive to raise the public’s awareness before going ahead with the deregulation.

It is a fact, though, that JSOG has not been sitting idle. The society has joined forces with related organizations in cautioning pregnant women and asking unauthorized facilities and doctors to stop giving the tests.

If these efforts have not worked, JSOG should consider taking government-level measures.

This is a matter that entails issues of bioethics and disabled people’s right to life. As such, it requires consensus-building and thorough discussions involving not only doctors but also professionals from diverse fields and pregnant women themselves.

According to one statistic, more than 90 percent of women whose fetuses tested positive for Down syndrome or other disorders have chosen to abort. The number mirrors the difficult situations faced by people with disabilities and their families.

We fear the deregulation may have the effect of “affirming” this reality and leading to a closed society that does not acknowledge the diversity of human life.

We need to be really watchful.

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