A group of experts from the Ministry of Health wrote a report on Wednesday that clarified the Japanese government’s first commitment to prenatal genetic testing.
The report on a new type of prenatal test designed to detect chromosomal abnormalities in unborn children from their UKTN in the blood of pregnant women calls on the ministry, academic societies and other parties concerned to create a new steering committee.
It also includes plans to define criteria for facilities to perform testing and to promote certification of these facilities.
Currently, the Japanese Society of Obstetrics and Gynecology is playing the leading role in compiling these criteria. But the expert group felt it necessary for discussions on them to take a broader perspective.
According to the report and other sources, the proposed steering committee will include specialists from the ministry, JSOG, Japan Pediatric Society and patient groups as well as those with expertise in ethics.
The committee, which will be set up this summer at the Japan Association of Medical Sciences, will certify large-scale testing facilities capable of offering advice on inheritance and chromosomal abnormalities as well as affiliated clinics and their will allow the tests to be carried out. .
The report stresses that it would be appropriate to provide information on prenatal tests so that pregnant women can understand them and judge whether to have them, revising the long-standing policy, developed in 1998, of not proving actively this information.
But at the same time, the report advises that explanations of prenatal testing not be widely disseminated in pamphlet form so that pregnant women are not misled into thinking that testing is encouraged.
Such explanations should only be made on the proposed committee’s website, he said.
The report also stresses the importance of preparing hospitals as well as welfare and patient associations to help mothers informed of their unborn baby’s troubles.
In the meantime, no specific regulations on unauthorized installations are mentioned.
Prenatal UKTN testing began in Japan in 2013. JSOG has developed guidelines and has only certified large-scale medical facilities with full-time heredity counseling specialists because they are concerned that such testing will lead to the selection of who should live.
Soon after the introduction of the new type of testing, the number of unauthorized installations increased because the tests, which cost around 200,000 yen per case at the time, were lucrative. Lack of adequate counseling services has also become a problem.
JSOG announced in 2019 and 2020 revisions to its guidelines to allow physicians trained to perform prenatal testing, with the goal of increasing the number of certified facilities.
The JPS opposed the reviews at one point, fearing that counseling services would become inadequate.
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