Students and New Prenatal Tests. How to Think About the Future?
The new prenatal test, NITP, was announced in 2011 in the U.S. Clinical trials were conducted in Japan in 2013, and the test is now widely used in Japan.
Even for students who are not involved now, NIPT is an issue they may face at some point.
What did the students think throughout the class?
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NIPT Experience at Aoyama Gakuin High School
January 2019. A simulated NIPT class was held at Aoyama Gakuin High School in Shibuya, Tokyo, to "consider the feelings of the parties involved in the testing".
The class will use lots and dice to determine the "likelihood of being positive when NIPT is done," the "probability of being 'not really positive' by amniotic fluid testing, which is a definitive diagnosis," and the "probability of being born with a recessive genetic disease," according to each.
The red and blue lots were used for the "likelihood of being positive when doing a NIPT" experience. If you get red, you are positive.
When they actually went for the test, they commented that even though it was a simulated experience, "the moment when you find out the result is hard. Those who drew red (positive) were also upset and responded that they should have thought more about taking the test.
In the "probability that the amniotic fluid test, which is a definitive diagnosis, is not really positive" experience, a dice is rolled and a pseudo test is performed.
When I rolled the dice, surprisingly, I did not get a "1". The probability of actually being "negative" was less than 1/6 with the dice, and I realized the weight of being confirmed.
On the other hand, there are those who question even if they get a "1". They were relieved that the child was not handicapped, but wondered if it was a good thing to judge a child as "good" based on whether or not he or she was handicapped (i.e., choosing life).
In "The Probability of Being Born with a Recessive Genetic Disorder," two sets of papers with the numbers 1 to 10 written on them are placed in a box each, and if a pair is drawn, the child will be born with a "recessive genetic disorder. However, in order for the participants to realize that they will be born in this experience, they are prepared to be paired from the beginning.
Of course, the students did not know this and drew the paired numbers. The shock of a positive result was so great that one student said, "I almost cried" when he thought of his own child.
Finally, after taking out the realistic baby dolls and letting them know that life is precious, we ask them if they would like to say goodbye to their babies.
The students could not give answers in class, but at least they did not think it was a good idea to simply choose abortion because of their "disability.
However, a number of respondents expressed the opinion that they would test with NIPT. This is because, although there is the anxiety of knowing the results, knowing allows them to think about "what to do. Some said they "want to talk about it after knowing the risks" and "want to marry a partner with whom the relationship will not be damaged even if the risks are known," showing their attitude toward the test.
This experience would have made you very anxious when you got a positive test. If the real test comes back positive, you will feel even more anxious and shocked than this time.
Regardless of whether you decide to have the baby or not, it is important to understand prenatal testing early on so that you can prepare for it without regret.
A mother's choice that can't be pretty
The students concluded that they were both for and against "giving birth to a crippled child. Although they understood the difficulty of raising a crippled child, they still questioned whether they should choose life because of their disability.
However, this is not always the case. When one considers the burden of not only taking care of the child, but also living expenses and school fees, and the difficulty of raising a child, one inevitably chooses abortion.
In fact, about 90% of mothers chose to have an abortion if the NIPT test was positive.
Of course, the choice of life is not necessarily a bad one. If a mother gives birth to a child "because she feels sorry for him or her," both mother and child will be unhappy if there is no financial burden and no time to spare.
Although we know that we are making a life choice, the abortion rate of about 90% can be considered a result that cannot be pretty.
Some mothers are also unable to come to a conclusion about their life choices. They are left wondering "what if it is positive?" and choose not to be tested.
Although many mothers have abortions, it can be said that they are struggling with a problem that has no answer.
What do you think will happen to new prenatal tests in the future?
In the future, NIPT will become widely used. Despite the worries about life choices, it is very convenient to be able to test easily and without risk.
The number of facilities participating in NIPT clinical studies (licensed clinics where NIPT can be tested) increased from 15 in 2013 to 37 in 2014. 7,740 tests were performed during the year, with the number increasing each year.
In 2018, an estimated 10 million inspections were performed worldwide, indicating the global spread of the disease.
In the future, marriages in which chromosome aberrations do not occur due to DNA combinations are also being studied; there is already such a thing as "DNA marriage activity" in which people marry based on DNA compatibility, and in the future, the idea of "eliminating the choice of life itself" by confirming it before conception will also emerge.
With the development of medical technology, the number of births of handicapped children is expected to dramatically decrease. Perhaps fetal therapy may be able to treat chromosomal abnormalities before birth.
You will need to learn to understand and learn about NIPT for the future.
Genetic Education Project" learning from childhood
I was invited as a guest lecturer at Aoyama Gakuin High School's hands-on training program.
Genetic Education Project, Department of Health Sciences, Nagasaki University School of Medicine
The team is also involved in the Genetic Education Project, which "aims to convey the dignity of human beings and the preciousness of life in response to the recent trend of disrespecting human life, such as the high incidence of juvenile crime and delinquency.
Briefly, this is an educational workshop to learn about the diversity and uniqueness of genes and to strengthen our understanding of disabled children and the people involved with them. Anyone interested, including students, can participate to deepen their understanding of genetics, including NIPT.
Educational materials for elementary, junior high, and high school students are also available, and many parents and their children participate.
Like the students at Aoyama Gakuin High School, the answers to NIPT are not always found immediately. If you learn from an early age, you will have that much more time to know and think about the world.
In recent years, there have been many moves to send physically-challenged children to regular classrooms. We believe that it is important to confront children with disabilities from an early age and understand their chromosome abnormalities, rather than looking for answers only at that time.
[Summary] Think of it as your own problem, not someone else's.
We believe that this hands-on experience has helped the students understand the weight of NIPT. Although NIPT is useful for detecting genetic abnormalities before childbirth, the anxiety before the test and the burden of finding out a positive result are heavy, and students need to be prepared and knowledgeable to accept any result in advance.
It is not an easy question to ponder, as the students were not able to come up with an answer right away. Many mothers regretted the answers they gave when forced to make a choice.
We need to seriously consider this as our own matter, rather than taking it lightly as someone else's, in case we are faced with it someday.
And the more people who take it seriously, the easier it will be to raise children. It is also important to deepen our knowledge and understanding so that we can offer advice and support to physically challenged children.
- 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!