This blog post examines the potential discrimination that could occur if genetic information is provided to an insurance company or employer, and how to protect individual rights.
Our genes contain information not only about our current and future health, but also about the health of our close family members and children. As genetic research progresses rapidly, genetic testing is becoming increasingly affordable, suggesting that people will widely undergo genetic testing in the near future. If this happens, more genetic information will be accumulated, which may lead to problems. In particular, serious problems may arise if this information is leaked outside the relationship between doctors and patients. Medical information leaks are a problem that still occurs from time to time, so the possibility of genetic information leaks can be fully expected. Therefore, it is important to recognize these problems and think about how to solve them.
Vartan Maria Norphus raised the question “Who will have access to genetic information?” and proposed his own solution. Now, let’s discuss that solution.
NoFus raised the issue of employment and insurance, where the leakage of genetic information can work most unfavorably for individuals. This is a very real problem, and we can admit that it is bound to happen. From the perspective of employees or the general public, there is a fear that they may be discriminated against by having their genetic information exposed to their employers or insurers. Genetic testing is currently highly trusted, and discrimination based on genetic testing is likely to be perceived as unavoidable discrimination, which will inevitably lead to increased anxiety. There may also be a fear of exposing one’s private life. On the other hand, insurance companies and employers may simply consider this as part of their business. Insurance companies will want to identify in advance those who are likely to pay large insurance claims to maintain their business, and employers will want to identify those who are likely to be unhealthy to ensure the stability of their business. This is because they need to make economic decisions.
There is a movie that predicted such a future society. The movie GATTACA, released in 1997, is set in a fictional society of the future where biotechnology has advanced to the point where people can know their life expectancy, diseases, and personality traits from birth, and their social status is determined based on this information. The main character Vincent is born with a gene that makes him have a weak heart and a short lifespan, and he is discriminated against at home and in society. However, Vincent desperately tries to achieve his dream, and eventually hides his identity and achieves what he wants. This film depicts how people are discriminated against in a society where genetic information is spread without any restrictions. If such a future society actually becomes a reality, there is a good chance that the world will change like in this movie. In other words, if society becomes one in which insurance companies or employers know genetic information unconditionally, or if genetic information is spread indiscriminately, it will be a very unfair world.
The problem we face today is that the rights of insurance companies and companies to own genetic information and the rights of individuals not to have their information leaked are in conflict. However, it is clear that if information is spread unconditionally, serious problems will arise, so we need to think about who can access genetic information and to what extent.
How should we solve this problem? Let’s go back to the opinion of Balthazar Maria Norphus. NoFus has proposed several solutions. These are summarized as follows. First, insurance companies should temporarily stop requiring genetic testing as a condition for providing insurance to applicants and should educate themselves on the scientific importance of genetic information. Second, access to research records or results should not be allowed, and insurance companies should be allowed to access minimal medical information to create minimum standards. This approach should be based on a consensus among insurers, health experts, and patient groups. Finally, once the scientific value of genetic information has been established, insurers could require applicants to undergo genetic testing.
However, Noppers’ proposal seems to underestimate the assumption that science and technology are quite advanced. The need to withhold judgment before establishing scientific value means that the reliability of genetic information is not yet high. However, since the reliability of genetic testing is high and the information it provides has a strong influence, the discussion of how far this information should be shared is already very important. Restricting access to research records and results, and restricting access to medical information is a good solution. However, it should be remembered that at the time this discussion is taking place, powerful information has already been created.
NoFUS also made several suggestions on the issue of employment. Here, too, it suggested that genetic testing should only be conducted if its value has been scientifically proven, and that it should be postponed until then. It also suggested that when genetic distinctions are made, an explanation should be added that “the person has or is considered to have,” that the employer’s specific consent is required before testing, and that the scientific validity of genetic testing should be designated by the state. In this proposal, Noppers also seems to have underestimated the progress of genetic testing technology.
So, when the value of genetic testing is scientifically proven, how should this information be handled and to what extent should it be shared? The most important part of Noppers’ opinion that needs to be revised is that the state should resolutely prevent insurers or employers from providing this information. This is because the genes of an already-born person are an existence that cannot be changed. Genetic information, by spreading, will create discrimination that cannot be overcome or improved. This discrimination is difficult to overcome because it can be a strong basis for saying that everyone is human beings with the same dignity.
Currently, in most countries, when personal information is divided into classes, medical-related confidential information is given the highest priority. In South Korea, medical-related confidential information is designated as Class 1 personal information, along with sex life, race, ancestry, crime, national security, and creed. The Constitutional Court also ruled that “the permissibility of restrictions on sensitive personal information that is close to the inner core of human dignity or personality and the intimate private sphere, such as religious beliefs, physical and mental defects, and information about sex life, should be strictly verified.” This emphasizes that the leakage of medical information must be treated very seriously at the national level. Although insurers and companies can assert their rights, it is difficult to accept the argument that it is excessive not to provide this information. Genetic information contains very powerful information about individuals, so it must not be leaked under any circumstances.
And as Noppers mentioned, there is a very important prerequisite for this to happen. That is, medical information and research data must be more thoroughly protected. There are concerns that the computerization of medical information has increased the risk of leakage, and as a result, there is a policy discussion on how hospital-level survey respondents collect personal information. The detailed implementation of this policy has yet to be determined, but they too must uphold the principle of prioritizing the protection of personal medical information. Only when this protection is in place can individual choices be respected and a society free of insurmountable discrimination be created. In South Korea, where there are many private hospitals, it may be difficult to protect this information, but the protection of genetic information is an issue that must be addressed at the national level.
We have now looked at Noppers’s problem statement and solution to the question of how far genetic information should be shared, and discussed the parts of the solution that need to be modified. Noppers’s problem statement is appropriate and correctly points out that the interests of insurance companies and corporations and the rights of individuals will conflict. However, her solution somewhat underestimates the pace of development of genetic testing technology and the impact of the resulting information. In the future, a more careful and thorough approach will be required in the utilization and protection of genetic information, and strong regulations and protective measures will need to be put in place at the national level.
