Students and NIPT (Non-Invasive Prenatal Testing). How do you think about the future?

NIPT Experience at Aoyama Gakuin High School Division

In January 2019, a pseudo-experience class on NIPT (Non-Invasive Prenatal Testing) was conducted at Aoyama Gakuin Senior High School in Shibuya, Tokyo, with the aim of considering the feelings of those undergoing the test.

The class covered scenarios such as the likelihood of a positive result from NIPT, the probability of a false positive leading to further diagnostic tests like amniocentesis, and the probability of a recessive genetic disorder being born. Activities included using dice and draws to simulate these scenarios.

During the "likelihood of a positive result from NIPT" simulation, red and blue draws were used, where drawing red indicated a positive result. Participants expressed that even though it was a simulation, they found the moment of knowing the result to be distressing. Those who drew red (positive) were visibly shaken, reflecting that they should have considered more before taking the test.

In the simulation regarding the "probability of a false positive from amniocentesis," participants rolled dice to determine the outcome. A roll of '1' indicated a negative result. Interestingly, '1' was less frequently rolled than expected, highlighting the weight of a confirmed diagnosis.

Some participants questioned the implications of their reactions to a '1' result. While relieved to potentially avoid having a child with disabilities, they pondered whether it was right to judge a child's life based on the presence or absence of disabilities.

For the "probability of a recessive genetic disorder" simulation, slips of paper numbered 1 to 10 were paired in boxes. Participants drew pairs to simulate the chance of inheriting a recessive genetic disorder, preparing them to consider the reality of having such a child.

Participants drew pairs without knowing the setup, and reactions were significant when drawing a positive result (indicating a recessive disorder), with some students feeling emotional, imagining the scenario as if it were their own child.

Finally, using realistic baby dolls, students were asked if they would proceed with the pregnancy after understanding the gravity of life. While they did not decide during the class, they generally did not condone opting for abortion solely due to disability.

Overall, while there were various opinions on the idea of NIPT testing, many agreed on the importance of knowing the results to make informed decisions. Some expressed a desire to discuss risks openly and marry someone who wouldn't break off the relationship even with known risks.

This experience highlighted the significant anxiety felt upon receiving a positive result. It's likely that the real anxiety and shock from a true positive result during actual testing would exceed that of the simulation.

Regardless of the decision to proceed with pregnancy, early understanding of prenatal testing and preparing without regrets is crucial.

The Unavoidable Choices of Mothers

The students had mixed opinions regarding the decision to "give birth to a child with disabilities." While they understood the challenges of raising a child with disabilities, they questioned whether it was justified to make a decision about life solely based on the presence of disabilities.

However, when faced with the actual situation, such idealistic views often do not hold. Besides the emotional and practical challenges of caregiving, there are also financial burdens such as living expenses and education costs. Considering these difficulties, many inevitably choose abortion.

In fact, it's reported that about 90% of mothers opt for abortion when a positive result is indicated by NIPT testing.

Of course, deciding on life is not inherently wrong. Even if one decides to give birth out of pity, without financial stability or enough time, both the mother and child could end up unhappy.

While understanding the gravity of choosing life, the reality is that about 90% abortion rate suggests that idealistic views often do not match the actual decisions made.

Moreover, some mothers cannot come to a decision regarding life. They are left with lingering anxieties like "what if it's positive," which may lead them to choose not to undergo testing.

While many mothers choose abortion, it's clear they struggle with unresolved issues and difficulties.

What Will the Future Hold for Non-Invasive Prenatal Testing?

It is expected that NIPT will become widely adopted in the future. Despite the ethical dilemmas surrounding decisions about life, the convenience of being able to undergo testing without risks is highly advantageous.

Facilities participating in clinical research on NIPT (authorized clinics for NIPT testing) increased significantly from 15 in 2013 to 37 in 2014. Testing numbers have been steadily rising, with 7,740 tests conducted in one year.

In 2018, an estimated 10 million tests were conducted worldwide, indicating its global expansion.

Furthermore, research is underway on marriages where chromosome abnormalities do not occur due to combinations of DNA. "DNA matchmaking" based on DNA compatibility is already being practiced, and in the future, pre-pregnancy confirmation to eliminate decisions about life itself may emerge.

With advancements in medical technology, it is believed that the birth of children with disabilities will decrease dramatically. There is even potential for prenatal treatment of chromosomal abnormalities, which could further reduce such births.

Considering these developments, there will be a need to understand and educate oneself about NIPT for the future.

Learning About Genetics Since Childhood: "Genetic Education Project"

The team from Nagasaki University's Medical School, Health Sciences Department, Genetic Education Project, was invited as guest lecturers for experiential training at Aoyama Gakuin Senior High School. Their "Genetic Education Project" aims to convey the dignity of human life and the value of life in response to recent trends such as increased juvenile crime and misconduct that show disregard for human life.

In brief, this educational research group focuses on understanding genetic diversity and uniqueness, aiming to enhance understanding of children with disabilities and those involved with them. Anyone interested, including students, can participate, and the project includes learning about genetics, including NIPT, to deepen understanding.

Additionally, educational materials for elementary, middle, and high school students are available, and participation with parents is common.

Like the students at Aoyama Gakuin Senior High School, finding answers, including through NIPT, isn't immediate. By learning from a young age, individuals have more time to explore and understand the world.

In recent years, there's been a growing movement to integrate children with disabilities into regular classrooms. Rather than waiting until then to find answers, it's crucial to engage with children with disabilities from early childhood and understand chromosomal abnormalities.

[Conclusion] Considering It as Personal Rather Than Someone Else's Issue

Through this experiential training, it appears that students have understood the weight of NIPT. While the utility of identifying genetic abnormalities before birth is clear, the anxiety before testing and the burden of a positive result are significant. It's essential to be prepared with the readiness and knowledge to accept any result beforehand.

Just as the students couldn't provide immediate answers, this isn't a matter to be taken lightly or decided upon hastily. Many mothers regret the choices they make when faced with such decisions.

It's crucial not to casually dismiss these issues as irrelevant to oneself but to seriously consider them in preparation for the future.

With more people thinking seriously about these matters, environments conducive to raising children can be improved. It's also important to deepen knowledge and understanding to provide advice and support for children with disabilities.

References

• FRaU - Prenatal Diagnosis? To take it or not to take it? This is what teenagers had to worry about at Aoyama Gakuin High School
• FNN Prime Online -90% of the women have an abortion... "New Prenatal Diagnosis" forcing them to make a heavy decision.
• KOMPAS - Fetal Treatment
• Genetic Education Project
• National Association of Schools for Children with Disabilities Website -  Do not separate the children!