Are Genetic Tests Necessary for Children? Understanding Why the Government is Reluctant to Regulate it
More of a “parts list” than a “blueprint”…it is a mistake to think that it will reveal all abilities
Two private preschools operated by a private company in Tokyo are recommending and brokering genetic testing of children’s aptitudes and talents to their parents, the Mainichi Shimbun reported last month.
The two day-care centers are located in an upscale residential area of Tokyo, and according to the president of the management company, about one-third of the approximately 40 children at the day-care centers have undergone genetic testing.
After this news report, there were many comments on social networking sites, such as…,
- “Children are not puppets of their parents.
- This is unethical.” “This is unethical.
- This is unethical. This is unethical. It is connected to eugenics.
- “Is the result of an unsubstantiated test more important than the child in front of you?”
Critical voices have been raised.
The business of genetic testing for children seems to be spreading quietly, but can a child’s ability and aptitude be determined by examining his or her genes?
Dr. Yoshimitsu Fukushima, a specially-appointed professor at Shinshu University and a specialist in genetic medicine, points out in an article in the Mainichi Shimbun: “There is no scientific basis for testing to determine talent. We should first keep in mind the findings of reliable experts.
Professor Makoto Hayashi of Kogakuin University, whose research focuses on social issues in the life sciences, says this.
Human talent, learning ability, physical ability, and sensitivity are determined by the interaction of many genes,” says Makoto Hayashi, a professor at Kogakuin University whose research focuses on social issues in the life sciences. There are still too many unknowns. If you ask researchers, they will tell you that they do not know exactly what is going on.
According to the Mainichi Shimbun, parents who apply for a genetic test receive a test kit from the day-care center and send in a sample of their child’s saliva. A testing company in Hong Kong analyzes the results and sends a report of the test results to the parents via an app.
It is very difficult to convey the test results to people who have no knowledge of genetics without causing misunderstanding or anxiety. It is not something that can be done by simply handing over the test results. In the case of medical diagnosis at medical institutions, there are doctors and genetic counselors, but in the case of direct sales genetic tests provided directly to consumers, I think there are problems in terms of whether there is a system in place to communicate the results of analysis of genetic information and its interpretation.
Genetic testing kits for children’s abilities can be purchased online at any number of places. Some parents may believe that their children have the aptitude indicated by the test results, and may send their children to gifted education or lessons in an effort to develop their abilities. On the other hand, some parents may assume that their child is not capable and nip in the bud the child’s talent.
Genes are often referred to as the blueprint of an organism, but this is a very misleading expression among geneticists. It is not a blueprint, but more like a list of parts, and it is a mistake to think that we can know all the abilities by knowing the genes. It may be better to think of the judgment of a genetic test that claims to examine abilities as a kind of fortune-telling.
Are children’s rights being violated? The “Ministry of Economy, Trade and Industry,” which has jurisdiction over the issue, is reluctant to regulate
Experts have long expressed concern about genetic testing sold directly to consumers by companies for use in children’s education. Despite this, Professor Hayashi points out, “It has gone unchecked.
The organizations that conduct genetic testing for the general public seem to limit the scope of testing to adults,” Hayashi said. However, this is only a voluntary standard of the association, and testing companies that are not members of the association are left to their own devices.
While the Ministry of Health, Labor and Welfare has jurisdiction over genetic testing for medical purposes conducted by hospitals, there are no regulations for direct sales of genetic tests to the general public. The Ministry of Economy, Trade and Industry (METI), not the Ministry of Health, Labor and Welfare (MHLW), is in charge of the direct sales type.
Generally speaking, METI focuses on nurturing the seeds of various industries for the sake of economic growth. That is why they are reluctant to impose regulations.
At a press conference on April 16, Minister of Health, Labor, and Welfare Keizo Takemi stated that he was “surprised that genome testing was being conducted on small children,” and that he would consider taking action against private genetic testing.
If the government were to take an interagency approach and focus on protecting children, I think we could create rules that would in some way prohibit or curtail genetic testing that markets children.”
What are Professor Hayashi’s thoughts on regulating genetic testing of children?
I personally think it is acceptable to regulate genetic testing from the standpoint of protecting children’s rights.
The Convention on the Rights of the Child says this. The Convention on the Rights of the Child states that children have the right to freely express their opinions on matters that concern them, and that these opinions must be given full consideration in accordance with the child’s development.
Whether or not a child attending kindergarten or preschool would want to know his or her genetic predisposition? In the first place, is he or she competent enough to decide whether or not he or she wants to know?
There is a big question as to whether knowing genetic information at the discretion of the parents before they know the child’s intention does not constitute a violation of the child’s rights. It can be said that when parents conduct genetic testing on their children and learn the results, they are depriving the children of their freedom to ‘not know’ or ‘not be informed.
Incidentally, Professor Kaori Muto of the Institute of Medical Science at the University of Tokyo, who specializes in medical sociology, published about 10 years ago a checklist of 10 articles for those who are wondering whether to buy a genetic test.
10 Leave your children the right to make their own choices as adults.
It is the duty of adults to protect the genetic information of minors. (Omitted) Please think very, very carefully about whether or not this is really in the best interest of that child.”
The genetic testing business takes advantage of the anxiety of parents who are seriously concerned about their children’s education.”
Another important issue, in my opinion, is the problem of a meritocratic society.
When a child’s genes are tested, parents are trying to tune their child’s educational environment for optimal performance by examining the child’s specifications. Parents may do this for the sake of their children, but examining and trying to develop their children’s abilities does not necessarily lead to their children’s happiness.
But parents assume that developing abilities is for the sake of their children’s happiness. The reason why parents are so concerned about ability is because Japan is an ability-oriented society.
As a parent, it is natural to want your child to have a bright future, but a child’s life is his or her own. It is often said that children do not grow up according to their parents’ wishes.
Every parent is more or less anxious about whether this is the right way to raise their children. I think the genetic testing business is a business that takes advantage of the anxiety of parents who are seriously concerned about their children’s education.
Parents who are in daily contact with their children should know best what their children are interested in and what they are not good at. To use genetic testing to find out is like outsourcing the role of parents.
Of course, outsourcing to reduce the burden of child-rearing is a good thing, but is genetic testing really an appropriate item to outsource?
As direct sales genetic testing services for children develop in the future, parental awareness will become even more important than it is now.
Even if credible information about public genetic testing emerges in the future, I don’t think it will lead to a situation where people will recognize the benefits of genetic testing for giftedness in children and promote it,” he said.
There is the issue of children’s rights to begin with. Also, I am not sure that society should remain in a situation that encourages people to take genetic tests. If everyone believes that it is important for children to follow the path they choose, regardless of their abilities, and that this is a happy thing for both the children and their parents, then genetic testing may not be necessary.
What would be desirable would be a society in which genetic testing to determine a child’s talent would seem pointless.
Makoto Hay ashi is a professor at Kogakuin University’s Institute for the Advancement of Education. Graduated from the University of Tokyo with a B.A. in Liberal Arts and an M.S. in Science from the University of Tokyo, where he has been in his current position since 2015. Co-author of “Ethics of Engineers” (Corona Publishing Co., Ltd.), etc.
Interview and text by： Sayuri Saito
