We will discuss the impact of genetic information on individual rights and privacy, and explore the discrimination issues that may arise when insurers and employers have this information in their possession and how to address them.
Our genes carry information not only about our current and future health, but also about the health of our close family members and children. Genetic research is advancing rapidly and genetic testing is becoming increasingly affordable, suggesting that people will be widely genetically tested in the near future. This will lead to an even greater accumulation of genetic information, which can lead to problems. In particular, leaking this information outside of the doctor-patient relationship can cause serious problems. Medical data breaches are a common problem today, so it’s not unreasonable to expect genetic data breaches to occur. It’s important to recognize these issues and think about how to address them.
Varta Maria Nofus has raised the question “Who will have access to genetic information?” in depth, and has proposed her own solution. Let’s discuss her solution.
Nofus raised the issue of employment and insurance, where the release of genetic information could be most detrimental to individuals. This is a very real problem, and we can admit that it’s bound to happen. From the perspective of employees and the general public, there is a fear that they could be discriminated against by having their genetic information exposed to employers or insurers. Genes are currently very trusted, and discrimination based on genes is likely to be perceived as unjustifiable discrimination, so there is a lot of anxiety about this. There is also a fear of privacy. On the other hand, underwriters and employers may see it as simply part of their business. Insurers want to stay in business, and employers want to know in advance who is likely to pay large claims or who is likely to be unhealthy in order to keep their business stable. This is because they have to make economic judgments.
There’s a movie that predicted this future society. The movie GATTACA, released in 1997, is set in a fictionalized future where biotechnological advances have made it possible to know your life expectancy, illnesses, personality, and social status at birth. Vincent, the protagonist, is born with a gene that causes a weak heart and a short life span, and is discriminated against at home and in society. However, Vincent strives desperately for his dreams, and eventually hides his identity to achieve what he wants. The movie depicts a society in which genetic information is spread without any restrictions and people face a lot of discrimination. In fact, if this future society becomes a reality, it is quite possible that the world will change in the same way as in the movie: it will be a very unfair world where genetic information is unconditionally available to insurers and employers, or where genetic information is disseminated indiscriminately.
The problem we have now is a conflict between the rights of insurers and companies to own genetic information and the rights of individuals to not have that information disclosed. However, it is clear that the unconditional dissemination of information will cause serious problems, so we need to think about who has access to genetic information and to what extent.
How do we solve this problem? Let’s go back to Varta Maria Nofus’s opinion. She suggests a few solutions, which we’ll summarize below. First, insurers should temporarily stop requiring genetic testing as a condition of providing insurance to applicants and educate them on the scientific importance of genetic information. Second, no access to research records or results should be allowed, but underwriters should have access to a minimum amount of medical information to create a baseline. This access should be based on a consensus of insurers, health professionals, and patient coalitions. Finally, if the scientific value of genetic information is proven, insurers could require genetic testing of applicants.
However, Norfus’s proposal seems to underestimate the state of the science and technology. The need to withhold judgment before establishing scientific value implies that genetic information is not yet highly reliable. However, given the high reliability of genetic testing and the power of the information, the discussion about the extent to which this information should be shared is already very important. The idea of limiting access to research records and results, as well as access to medical information, is a good one. However, it’s important to remember that by the time this discussion takes place, powerful information has already been created.
Nofus also has some suggestions on the issue of employment. He suggests that genetic testing should only be done when its value has been scientifically proven and should be delayed until then. He also suggests that any distinction based on genes should be qualified with the words “that the person has or is considered to have”, that specific consent from the employer should be required before testing, and that the scientific validity of genetic testing should be determined by the state. In this proposal, Norfus underestimates the advances in genetic testing technology.
So when the value of genetic testing is scientifically proven, how should this information be handled and how much should be shared? The most important part of Nofuss’s proposal is that the state should be adamant that this information is not given to insurers or employers. Once a person has been born, their genes are something that can never be changed. The mere dissemination of genetic information will create discrimination that can never be overcome or ameliorated. This discrimination is difficult to overcome because it is a powerful basis for saying that everyone is a human being with the same dignity.
Currently, in most countries, when personal information is categorized, confidential medical information is given the highest priority. In South Korea, medical information is designated as Class 1 personal information, along with sexual life, race, ancestry, crimes, national security, and religious beliefs. The Constitutional Court has also ruled that “the permissibility of such restrictions must be strictly verified for sensitive personal information that approaches the inner core of human dignity or personality and the intimate private sphere, such as information about religious beliefs, physical and mental defects, and sexual life.” This underscores the need to take healthcare breaches very seriously at the national level. Even if insurers and companies can assert their rights, it’s hard to argue that not providing this information is excessive. Genetic information is a very powerful piece of information about an individual and should not be compromised under any circumstances.
And, as Nofus points out, there is a very important precondition for this to happen. Medical information and research data needs to be better protected. Currently, there is concern that the computerization of medical information has increased the risk of breaches, which has led to policy discussions about how personal information is being collected by hospital-level survey respondents. While the specifics of this policy are still being worked out, they should be guided by the principle that the privacy of individuals’ medical information must be prioritized. Only when this protection is in place can a society be created in which individual choices are respected and there is no discrimination that cannot be crossed. While this may be difficult in Korea, with its many private hospitals, the protection of genetic information is an issue that must be addressed at the national level.
So far, we have discussed Norfus’s problem and solution to the question of how much genetic information should be shared, and we have discussed what needs to be fixed in the solution. While Norfus’s problem is valid, and she correctly identifies the conflict between the interests of insurers and corporations and the rights of individuals, her solution underestimates the speed at which genetic testing technology is advancing and the impact of the information it provides. Going forward, a more cautious and thorough approach to the use and protection of genetic information will be needed, and stronger regulations and safeguards will need to be put in place at the national level.
