In this blog post, we examine the potential issues of discrimination that may arise when genetic information is provided to insurance companies or employers, as well as measures 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 advances rapidly, genetic testing is becoming increasingly affordable, suggesting that genetic testing will become widespread in the near future. If this happens, more genetic data will be accumulated, and this could lead to various problems. In particular, serious problems can arise if this information leaks outside the doctor-patient relationship. Since leaks of medical information are already a common occurrence, it is entirely plausible that leaks of genetic information could also occur. Therefore, it is important to recognize these issues and consider how to address them.
Barta Maria Nofers raised a profound issue by asking, “Who will have access to genetic information?” and presented her own solution. Let us now discuss that solution.
Nofers highlighted employment and insurance issues, noting that leaks of genetic information could be most detrimental to individuals in these areas. This is a very realistic concern, and we must acknowledge that problems are bound to arise. From the perspective of employees or the general public, there is anxiety that their genetic information, once exposed to employers or insurers, could lead to discrimination. Since genetic data is currently highly trusted, and discrimination based on genetics is likely to be perceived as unavoidable, this anxiety is bound to grow. There will also be fears regarding the exposure of private information. On the other hand, insurers and employers may view this simply as part of their business operations. Insurance companies, to maintain their business, and employers, to ensure the stable operation of their businesses, will likely seek to identify in advance those who are highly likely to claim large insurance payouts or those with a high probability of poor health. This is because they must make economic decisions.
There is a film that foreshadowed this future society. Released in 1997, the movie *GATTACA* is set in a fictional future society where biotechnology has advanced to the point where a person’s life expectancy, diseases, and personality can be determined at birth, and social status is determined based on this information. The protagonist, Vincent, was born with a genetic predisposition to a weak heart and a short life expectancy, leading him to face discrimination both at home and in society. However, Vincent works desperately to achieve his dreams and eventually attempts to accomplish his goals while hiding his true identity. This film depicts a society where genetic information circulates freely, leading to widespread discrimination against people. If such a future society were to become a reality, there is a very real possibility that the world could change just as it does in the movie. In other words, if we were to live in a society where insurers or employers have unconditional access to genetic information, or where such information is disseminated indiscriminately, it would create a deeply unfair world.
The problem we currently face is the conflict between the right of insurance companies and corporations to possess genetic information and the individual’s right to prevent that information from being leaked. However, since it is clear that serious problems will arise if information is disseminated unconditionally, we must consider who should have access to genetic information and to what extent.
How should we resolve this issue? Let’s return to the views of Varta Maria Nopfer. Nopfer proposed several solutions, which can be summarized as follows. First, insurance companies should temporarily suspend the requirement for genetic testing as a condition for providing coverage to prospective policyholders, and insurers should educate the public on the scientific importance of genetic information. Second, access to research records or results should not be permitted; instead, insurers should be allowed access to only the minimum necessary medical information to establish baseline criteria. This access must be based on a consensus among insurers, healthcare professionals, and patient advocacy groups. Finally, once the scientific value of genetic information is proven, insurers may require genetic testing from prospective policyholders.
However, Nofar’s proposal seems to underestimate the assumption that science and technology have already advanced significantly. The suggestion that judgment should be reserved until scientific value is established implies that the reliability of genetic information is not yet high. Yet, given that genetic testing is highly reliable and that this information wields immense influence, we must consider that the discussion regarding the extent to which this information should be shared is already of critical importance. Restricting access to research records and results, as well as limiting access to medical information, is a sound solution. However, we must remember that by the time this discussion takes place, powerful information has already been generated.
Nofus also made several proposals regarding employment issues. Here, too, he suggested that genetic testing should only be conducted when its value has been scientifically proven, and should be postponed until then. Furthermore, he proposed that when making distinctions based on genetics, the phrase “that a person possesses or is presumed to possess” must be added; specific consent from the employee is required prior to testing; and the scientific validity of genetic testing must be determined by the state. In this proposal as well, Nofar appears to have underestimated the advancement 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 critical aspect of Nofar’s argument that needs revision is that the state must strictly prohibit the provision of this information to insurers or employers. This is because the genes of a person who has already been born are an immutable part of their very being. The mere dissemination of genetic information will create discrimination that is impossible to overcome and cannot be remedied. This discrimination is difficult to overcome because it serves as a powerful basis for undermining the claim that all humans possess equal dignity.
In most countries today, when classifying personal information by level, medical confidentiality holds the highest priority. In South Korea, medical confidentiality is designated as Class 1 personal information, alongside information regarding sexual activity, race, lineage, criminal history, national security, and religious beliefs. The Constitutional Court has also ruled that “the permissibility of restrictions on sensitive personal information—such as religious beliefs, physical or mental disabilities, and information regarding sexual life—which is closely tied to human dignity, the inner core of one’s personality, or the intimate private sphere, must be strictly scrutinized.” This emphasizes that the state must treat the leakage of medical information with the utmost seriousness. Even if insurance providers and companies claim they have the right to request this information, it is difficult to accept the argument that refusing to provide it constitutes an excessive measure. Genetic information contains highly sensitive details about an individual and must never be leaked under any circumstances.
Furthermore, as Noffers also mentioned, a crucial prerequisite is necessary for this to be realized: medical information and research data must be protected even more rigorously. There are concerns that the digitization of medical information has increased the risk of leaks, and consequently, policy discussions are underway regarding how hospital-level survey respondents collect personal information. Although the specific implementation details of this policy have not yet been determined, they too must adhere to the principle of prioritizing the protection of individuals’ medical information. Only when such protection is ensured can individual choices be respected and a society free from insurmountable discrimination be created. While protecting such information may be difficult in South Korea, given the prevalence of private hospitals, the protection of genetic information is an issue that must be addressed at the national level.
We have examined Nofus’s concerns regarding the extent to which genetic information should be shared, as well as her proposed solutions, and discussed the aspects of those solutions that require revision. Nofus’s critique is appropriate, and she accurately identified the potential conflict between the interests of insurance companies and corporations and individual rights. However, her proposed solution somewhat underestimates the pace of advancement in genetic testing technology and the resulting influence of such information. Moving forward, a more cautious and thorough approach is needed regarding the use and protection of genetic information, and robust regulatory frameworks and protective measures must be established at the national level.
