The pros and cons of prenatal diagnosis
The benefits of prenatal diagnosis can be tremendous, but on the other hand, parents are being asked to make decisions about what decisions to make for their babies because they know before the birth.
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The State of Prenatal Diagnosis
There are different types of prenatal diagnosis. In a broad sense, prenatal diagnosis is defined as an investigation of the baby's development and the presence or absence of abnormalities during pregnancy. In recent years, tests for fetal abnormalities have gained more attention with the increase in the number of births to older women over the age of 35. In fact, the number of people undergoing prenatal testing has been on the rise over the past few years. The benefits of prenatal diagnosis include the prenatal detection of chromosomal abnormalities such as Down syndrome, as well as brain and heart abnormalities.
While the benefits of prenatal diagnosis can be said to be enormous, it can also be said that parents are being asked to make decisions about their babies because they can know before the birth. In the future, it will be necessary for the government and other concerned parties to further discuss the issue of prenatal diagnosis.
The reality of prenatal diagnosis
As mentioned above, prenatal diagnosis is highly beneficial because it can detect specific fetal abnormalities. Paradoxically, however, it can also reveal that the baby will be born with a disability before birth. As parents, it is inevitable that we wish for the baby's happiness. How many parents can make the decision to carry their baby to term?
It is assumed that when an abnormality is found during prenatal diagnosis, the child may not have received appropriate counseling. While some licensed facilities have a system in place to provide counseling, some unlicensed facilities do not. This situation may lead parents to easily choose abortion, which is an undeniable risk. It could be said that this is simply an act of selecting life based solely on the parents' sense of values.
Moreover, in light of the Maternal Protection Law, it can be interpreted as not recognizing fetal abnormality as a reason for abortion. The reality is that abortions are being performed under the guise of "maternal health," which has been interpreted in an expansive manner. We would like you to understand the ethical issues involved before making a decision on whether or not to undergo prenatal diagnosis by NIPT.
About NIPT, one of the methods of prenatal diagnosis
New-type prenatal diagnosis (NIPT) is a technique that can investigate specific chromosomal diseases of the fetus by analyzing fetal DNA fragments contained in the mother's blood.
The exact name of NIPT is noninvasive prenatal genetic testing or new prenatal genetic testing using maternal blood. It is called a new type of prenatal diagnosis because it is a newly established test compared to existing prenatal diagnostic methods such as maternal serum markers. This new prenatal diagnosis (NIPT) can specifically investigate the following three specific abnormalities.
- Down syndrome (21 trisomy)
- Edwards syndrome (18 trisomy)
- Pato syndrome (13 trisomy)
When these three factors are taken together, the total number of fetal chromosome disorders is estimated to be as high as 70%.
In Japan, about 49,000 pregnant women have been tested for the new prenatal diagnosis (NIPT) in the four years from April 2013 to March 2017.
While there are countries outside of Japan where it is possible to investigate diseases other than the three mentioned above, as of today, according to the guidelines of the Japanese Medical Association and the Japanese Society of Obstetrics and Gynecology, it has been concluded that only the three diseases can be investigated in Japan.
Opinion of a person whose abnormality was found in prenatal diagnosis
Now that we have explained about prenatal diagnosis, how did pregnant women who were actually diagnosed with fetal abnormalities feel? Here is the opinion of a woman in her 40s living in Tokyo. In 2016, when she was pregnant, she learned about the new type of prenatal diagnosis (NIPT), which can detect the possibility of Down's syndrome or other problems in the fetus just by drawing blood, and she decided to undergo the test.
This woman simply intended to accept the reality of the situation and give birth, even if the test results were in the wrong direction, after knowing the exact condition of her baby before it was born. However, she received a test result stating that there was a "high possibility that the fetus had an abnormal number of chromosomes. She then underwent another test and was diagnosed that her unborn baby had Down syndrome. Upon hearing the answer, the woman said she was overwhelmed with a very strong sense of anxiety.
She said that at the time, the company she worked for was in the midst of a critical period of business and was extremely busy. In the midst of such a living environment, she began to question whether she would actually be able to successfully raise a child with a disability. There are limits to what one can do on one's own, so she had questions about "the burden of raising a child with Down syndrome and the support she would receive," "whether she and her husband could continue to work together," and "what would happen to their child's life when he grew up and became an adult," at the medical facility where she underwent prenatal diagnostic testing, She said she did not get satisfactory answers in counseling. As a result, she did not have the confidence to balance work and child-rearing, and after much deliberation, she decided to have an abortion. As a result, she recalls, "If I had not been tested, I might have accepted and raised my child with Down syndrome.
Future Trends in Prenatal Diagnosis
Originally, five related organizations, including the Japan Society of Obstetrics and Gynecology (Nissan Women's) and the Japan Medical Association, concluded that NIPT should only be performed at accredited medical institutions that meet the conditions of having established a system to provide appropriate genetic counseling. This is because pregnant women are expected to make a very important decision to abort their unborn child, and if NIPT is spread inappropriately, it may lead to discrimination against people with Down's syndrome and others.
However, since the DNA analysis is performed by the testing company and the medical institution only needs to draw blood except for counseling, non-accredited medical institutions began to perform NIPT in 2016. The number of NIPTs performed at accredited facilities has been decreasing since 2016, and a significant number of pregnant women are receiving their tests at non-accredited facilities. In many cases, pregnant women who underwent testing at non-accredited facilities only receive the test results by mail and do not receive an appropriate explanation.
The Japan Society of Obstetrics and Gynecology (Nissan Women's) recognizes this situation as a matter of concern and has drafted a guideline to relax the requirements for accreditation of facilities that perform the new prenatal diagnosis (NIPT) so that obstetrics and gynecology clinics can also perform the test. This is because it is difficult for clinics to be accredited under the requirements for accreditation, which include the presence of a full-time pediatrician. In response, the Japan Pediatric Society and other organizations have proposed counterarguments such as "Insufficient involvement of pediatricians, who are the voice of the child. In order to overcome this situation, the Ministry of Health, Labor, and Welfare (MHLW) has intervened to resolve the pending issues and established an expert committee to begin discussions on the ideal form of the new prenatal diagnosis (NIPT). Thus, it is expected that NIPT will be discussed more deeply in the future.
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