Issues Related to NIPT and Abortion
What concerns might arise with the spread of NIPT?
This article delves into the ethical issues posed by NIPT and discusses the environment surrounding abortion in Japan.
Table of Contents
Introduction
The new prenatal diagnosis has shown high levels of safety and accuracy and has spread globally in the 2010s. While it has the advantage of determining whether a fetus has congenital chromosomal disorders such as Down syndrome, it also brings to light certain issues.
One of these issues is the "choice of life" problem, as most couples who undergo prenatal diagnosis opt for termination if the fetus is found to have Down syndrome.
This article explores the ethical issues posed by NIPT and discusses the environment surrounding abortion in Japan.
This article does not take a stance on whether NIPT and the resulting terminations are good or bad, but aims to raise concerns about the spread of NIPT without ethical considerations.
Therefore, if you are considering having children in the future or are already pregnant and considering prenatal testing, please join us in this discussion.
The Spread of NIPT in Japan
In Japan, NIPT can only be performed at certified facilities for women who are "35 years or older at the time of delivery," as stipulated by the Japan Society of Obstetrics and Gynecology.
The cost is also about 200,000 yen, which is relatively high, and genetic counseling by a genetic counselor is mandatory, making it not easy to undergo NIPT.
Additionally, the recommended facilities for testing are those recognized by the Japan Society of Obstetrics and Gynecology, but since NIPT is considered a clinical trial, the number of such facilities is not large (recent efforts by the government aim to increase the number of facilities by treating NIPT as a general practice).
However, the lack of legal binding force in these regulations has led to an increase in private clinics not following the society's guidance. These clinics often offer cheaper testing without genetic counseling, which is a point of concern.
Unlicensed does not mean illegal (the pros and cons of licensing are not the focus of this article). Many clinics simply send samples to reliable overseas testing facilities, making it easy to find trustworthy testing providers.
Issues Arising from Termination Following Test Results
The problem arises when most couples who undergo prenatal testing have already decided to terminate the pregnancy if the fetus has Down syndrome.
Supporting this concern, between 2013 and 2017, only 26 of the 933 women diagnosed as "positive" after NIPT chose to continue their pregnancy, which is just 3%.
Of course, the decision to terminate involves various personal conflicts and circumstances, and it is not for others to judge.
However, the increase in NIPT usage without widespread discussions on the risks and ethical aspects of termination, and the devaluation of counseling, is alarming.
There is a growing concern that the normalization of terminating fetuses diagnosed with Down syndrome could lead to a lack of guilt about the decision.
This attitude can be seen as a "eugenic preference" mindset, and if it spreads, it could increase discriminatory feelings towards people with disabilities.
To prevent our thoughts and feelings from unknowingly becoming discriminatory, proper guidance and counseling from medical societies are essential.
Additionally, compared to overseas, where discussions on the ethics of abortion are more active due to religious reasons, these topics seem to be less emphasized in Japan.
Current Abortion Situation in Japan from a Macro Perspective
Let's take a broader look at the situation surrounding abortion in Japan from a global perspective.
Unfortunately, Japan is known as a "backward country" in terms of abortion, with inadequate infrastructure despite high medical technology.
Abortion in Japan was effectively legalized ahead of other countries by the old Eugenic Protection Law enacted in 1948, but there has been little legal reform in the 70 years since.
The WHO issued "Guidelines on Safe Abortion" in 2012, recommending the use of medication for abortion, but this has not been approved in Japan, and the widely accepted vacuum aspiration method is not sufficiently used due to its high cost.
The main abortion method currently used in Japan is curettage, which poses significant risks to the woman, a concern noted by the WHO.
Additionally, abortion based on prenatal test results is not legally recognized in Japan.
In such cases, abortions are conducted under reports of health risks to the woman, and the husband's consent is required. This poses problems if the woman is experiencing domestic violence from her husband.
Considering these facts, it can be said that abortion in Japan is relatively risky, and this should be well understood when making decisions about childbirth.
Conclusion
As seen, prenatal testing can reveal that a fetus has Down syndrome, leading to terminations in families that would otherwise have given birth.
As mentioned earlier, the financial and time burdens of raising a child vary among individuals, and the circumstances leading to the decision to terminate are diverse. Therefore, we cannot outright deny terminations following prenatal test results.
However, if termination is chosen, it should be done after reconciling the desire for a healthy baby with the guilt of terminating a pregnancy.
Regardless of whether the decision is to give birth or terminate, having accurate information about the child is essential to avoid regret.
Therefore, the author recommends the highly safe and accurate NIPT, while also hoping that society does not normalize the "selection of life."
A 2011 study found that 99% of people with Down syndrome are satisfied with their lives, and 79% of parents of children with Down syndrome feel more positive about their lives because of their children.
This data suggests that discovering Down syndrome in a child is not necessarily cause for despair.
Therefore, in addition to professional genetic counseling, listening to the experiences of couples who have had children with Down syndrome can help in making better decisions.