How to Widely Accept Prenatal Diagnosis in the Future

Since 2013, our country has been working on clinical research on the new prenatal diagnosis, and it is widely conducted in both certified and uncertified facilities.

Of course, whether or not to undergo NIPT is a decision made by each individual pregnant woman.

It is predicted that NIPT will become more affordable in the future, and with the trend towards later marriages and births, more older pregnant women will consider the test. As a result, there is a high possibility that, similar to other countries, information about and access to NIPT will become available to all pregnant women.

Although there has been a cautious attitude towards the ethical issues surrounding NIPT, it is now necessary to widely recognize and accept NIPT.

This article explains how NIPT can be widely recognized and accepted in the future.

How Widespread is Prenatal Diagnosis?

How widely is NIPT recognized by the public?

According to a report from the working group on NIPT surveys, the number of facilities where the NIPT consortium's tests were conducted was 86 over six years until March 2019.

The number of test results collected was 72,526, and both the number of facilities and the annual number of tests have been increasing since NIPT began.

Additionally, NIPT can be conducted at non-certified facilities, and as of October 2019, there were 92 certified facilities and 55 uncertified facilities.

It is expected that the number of facilities offering NIPT at a lower cost will continue to increase.

Whether or Not to Undergo Prenatal Diagnosis Depends on the Individual Pregnant Woman's Thoughts

Even if more pregnant women undergo NIPT in Japan, it cannot be said that NIPT is widely recognized by the public.

Many people may know about NIPT as knowledge, but may not understand what kind of test it is, what kinds of fetal abnormalities it can detect, and what options are available for pregnancy or treatment after diagnosis.

In Japan, prenatal diagnosis is sometimes seen as a test that might lead to the decision to terminate the pregnancy, and some people have a negative impression of NIPT.

The fundamental idea is that whether or not to undergo NIPT is a decision made by each individual pregnant woman. The decision to undergo NIPT is up to each pregnant woman's thoughts.

Prenatal Diagnosis Will Become More Widespread

The Japan Society of Obstetrics and Gynecology views prenatal testing and diagnosis as tools to accurately understand fetal diseases when a fetus is considered likely to have a disease or when abnormalities are observed.

Therefore, in recent years, when more women are experiencing pregnancies and childbirth at an older age, many older pregnant women may become candidates for prenatal diagnosis.

Thus, for the generation that will give birth and raise children in the future, NIPT is not someone else's problem.

Looking at the history, NIPT started clinical testing in the United States in 2011 and began in Japan in 2013.

In 2018, the estimated number of NIPT tests conducted worldwide was 10 million, and there are currently many testing companies globally.

In Japan, NIPT is conducted in both certified and uncertified facilities, and as the number of facilities increases and the cost of testing decreases, it is easy to imagine that the number of NIPT tests will further increase and become more widely accepted by the public.

The Importance of Support Systems for Those Who Choose Prenatal Diagnosis

As NIPT becomes more widespread, it is important for pregnant women to receive the following:

• Appropriate and scientifically based information about NIPT
• Knowledge of the options available based on test results
• Support for decision-making after the test

Providing correct information about tests and diseases, understanding them, and having support systems such as genetic counseling to help with decision-making before and after testing are important.

Recently, the activities of NPOs like "Parent-Child Future Thinking Association," which provides information through initiatives such as the "Fetal Hotline," are noteworthy.

This association operates on a volunteer basis, supporting pregnant women who choose NIPT regardless of whether they continue their pregnancy after receiving the test results, from a neutral standpoint.

Through the "Fetal Hotline," pregnant women who find congenital diseases in their fetuses during pregnancy can receive advice from various perspectives on what kind of support they can receive after birth.

As a result, pregnant women can understand how to navigate their lives while imagining life after childbirth.

In the future, it is essential to expand support systems that help pregnant women with fetal diseases decide on treatment options and understand the support available after birth, regardless of whether they choose to undergo NIPT.

The Concept of Treating the Fetus

The "Parent-Child Future Thinking Association" supports pregnant women who choose NIPT, with a background in the concept of "fetal treatment."

Fetal treatment is "a medical technique that involves treating the fetus before birth, based on the prenatal diagnosis of fetal abnormalities, while ensuring the safety of the mother, to provide more effective treatment than postnatal treatment." *1

This considers the fetus as a medical subject, and if necessary, provides sufficient information and treats the fetus based on the prenatal diagnosis.

Although fetal treatment is currently limited, research that can be applied clinically is progressing, and conducting NIPT to detect fetal diseases early and treat them to reduce predicted disabilities is a possible option.

Conclusion: What is Needed to Widely Accept NIPT

NIPT will undoubtedly become more widely conducted in Japan.

From an ethical perspective, there are various opinions on whether to support, oppose, or proceed cautiously with testing, and it is urgent for society as a whole to deepen its understanding of this test.

It is time to think more deeply about what is needed to widely accept NIPT in Japan, as it has already spread in many other countries.

The top priority is to support the self-determination of pregnant women and their families and to ensure that the best environment is prepared for the children born.

From the perspective of fetal treatment, conducting NIPT and providing medical care to fetuses that need treatment, knowing the support available after birth for fetuses with congenital diseases, and enhancing support systems for pregnant women choosing NIPT are all necessary.

As NIPT becomes more widespread in Japan, it is urgent to establish systems that provide appropriate knowledge and information about NIPT and proper follow-up before and after testing.

References

• Akihiko Sekizawa - NIPT: Noninvasive Prenatal Testing - The 1st Working Group Report on Non-Invasive Prenatal Genetic Testing Using Maternal Blood - 2019
• *1 KOMPAS - Keio University Hospital Medical and Health Information Site - Fetal Treatment
• Fetal Skeletal Dysplasia Forum Wiki - Current Status and Future of Fetal Treatment
• Japan Fetal Treatment Group