New fetal test guideline

The Japan Society of Obstetrics and Gynecology has issued a guideline on a new prenatal detection test that can predict whether a fetus has either Down’s syndrome or Trisomy 18/13, which causes various health issues including heart problems and breathing difficulties.

The test, which began being used in the United States in 2011, is easy to administer, requiring only a blood sample from a pregnant woman. Therefore its use may spread quickly in Japan. It does, however, raise some ethical dilemmas. On the one hand, it can help pregnant women and their partners to prepare psychologically and otherwise for a baby who will be born with abnormalities. On the other, it could lead to a large number of abortions.

In Japan, insufficient public discussions have been held on ethical issues related to prenatal detection tests. One possibility is the advent of a society that as a whole excludes people with disabilities. Another is commercial exploitation of such tests by profit-making companies.

Now that the JSOG has issued the guideline, a variety of people including politicians, philosophers, religious thinkers, medical doctors, social welfare experts and parents of children with hereditary problems should rouse public discussion on the matter.

The new test examines a small amount of DNA from a fetus in a pregnant woman’s blood and finds out whether trisomy — three instances of a particular chromosome instead of the normal pair — exists. If abnormalities are found, amniotic diagnosis, which carries a slight risk of miscarriage, will be necessary to confirm the test results. The guideline says that the test should be carried out in hospitals that can provide adequate counseling. Such hospitals must have an obstetrician-gynecologist and a pediatrician who are permanently employed and experienced in prenatal detection tests. Either of them must be licensed as a medical geneticist.

According to the JSOG guidelines, the test can only be taken by women who in the past have carried fetuses with chromosomal abnormalities or given birth to a baby with such abnormalities or women who become pregnant at a relatively advanced age. Sixteen hospitals across Japan plan to start offering the test in April.

Importantly the guideline says that widespread use of the new test could lead to casual terminations of fetuses with Down’s syndrome or other abnormalities. It also mentions the possibility that some women will misunderstand the test results or not carefully consider their meaning.

Sufficient information and support must be provided to women who decide to take the test. At present such information and support are scant. Society as a whole also should establish a system that will help women who have decide to have babies with chromosomal abnormalities. It is also important to expand the opportunities for women to learn about the experiences of parents who are raising such children.

  • Firas Kraïem

    “One possibility is the advent of a society that as a whole excludes people with disabilities.”

    That is a genuine concern, but the proper way to address it is by having harsh anti-discrimination laws, which are actually enforced and carry significant penalties, and by education. Not by limiting such tests, which are a very good thing. And I say it with all the more certainty as I was born with a genetic abnormality myself, and I will sure as hell do everything I can fot it to not be passed on to my children if I have some. Anybody who thinks it’s all right to be born with one is delusional at best.

  • ume

    “According to the JSOG guidelines, the test can only be taken by women who in the past have carried fetuses with chromosomal abnormalities or given birth to a baby with such abnormalities or women who become pregnant at a relatively advanced age. ”

    The thing is, recently the “pregnant at a relatively advanced age” condition is very, very common. In pregnancy a “advanced age” is anything over 35, and statistically the chances of a 35, 40 or 45 year old women having a downs syndrome baby are much higher than a 25 year old. Of course, sometimes younger women do conceive a child with some kind of abnormality too, but doctors are trained to pick this up by ultrasound also.

    We should be encouraging women to have babies at a proper age – in their 20s or early 30s – not at a “advanced age” which is what is happening more and more now.
    “Having children younger than late 30s or 40s” is the solution to the problem of increasing chromozonal abnormalities, NOT tests, swiftly followed by abortions when parents don’t get the “right” outcome.