In this blog post, we’ll examine the potential issues of discrimination that may arise when genetic information is provided to insurance companies or employers, discuss how to protect individual rights, and explore the ideal approach to the use and protection of genetic information.
Our genes contain information not only about our current health status but also about diseases that may develop in the future and various traits that could be passed on to close family members and children. Genomic research and analysis technologies have been advancing rapidly, and the cost of genetic testing continues to decline. As a result, the scope of application for personal genetic testing is gradually expanding, not only in medical settings but also in health management services. Consequently, we are entering an era of large-scale accumulation of genetic information, which is raising new social and ethical issues. In particular, serious problems can arise if this information is leaked outside the relationship between healthcare providers and patients or provided to third parties. Since the leakage of medical information remains a persistent social problem, it is difficult to assume that genetic information is completely immune to the risk of leakage. Therefore, it is of the utmost importance to recognize these risks in advance and engage in a societal discussion on how to protect individual rights.
Barta Maria Nopfer raised the question, “Who will have access to genetic information?” and engaged in an in-depth discussion regarding the scope of genetic information use and access rights. We will now examine the solutions she proposed and their implications.
Nopfer identified employment and insurance as the areas where genetic information could most adversely affect individuals. This is a very real concern and a problem that is highly likely to occur. From the perspective of workers and the general public, there is a fear that if their genetic information becomes known to employers or insurance companies, they may face discrimination during the hiring or promotion process, or when applying for insurance or having premiums calculated. Today, genetic testing is used in medical settings based on a high degree of reliability, and discrimination based on genetics is a particularly significant source of anxiety because it is difficult for individuals to overcome through their own efforts. There is also concern about privacy violations stemming from the exposure of sensitive information, such as one’s health and family medical history.
On the other hand, the perspectives of insurance companies and employers may differ. Insurance companies will seek to accurately assess risk to ensure sustainable operations, and employers, too, must consider operational efficiency and productivity. Therefore, there is an incentive to identify in advance individuals who are likely to develop diseases in the future or require long-term treatment. While this is somewhat understandable from an economic standpoint, it is highly likely to conflict with fundamental individual rights.
There is a work that envisioned this future—where genetic information could lead to social discrimination—long ago. The 1997 film ‘GATTACA’ is set in a future society where biotechnology has advanced to such an extent that life expectancy, diseases, and physical abilities can be predicted at birth. In this society, genetic information directly influences an individual’s social status and career choices. The protagonist, Vincent, faces discrimination from his family and society from childhood simply because he was born with genes that predict a weak heart and a short life expectancy. However, he works tirelessly to achieve his dream and eventually pursues his ambition of becoming an astronaut while concealing his genetic information. This film symbolically illustrates the severe discrimination an individual may face if genetic information is utilized throughout society without any restrictions. Considering that genetic analysis technology is advancing rapidly even today, the issues depicted in the film should be viewed not as mere fantasy but as a very real warning. In other words, if we were to live in a society where insurance companies or employers freely utilize genetic information, or where such information is indiscriminately leaked, we could end up with a deeply unfair society where a person’s innate genes—rather than their abilities—become the standard by which they are judged.
The problem we currently face is the conflict between the right of insurance companies and corporations to utilize genetic information and the individual’s right to prevent that information from being leaked to the outside world.
However, it is clear that serious social problems will arise if genetic information is shared without any restrictions. Therefore, it is of the utmost importance to establish clear social standards regarding who should have access to genetic information and to what extent.
How should this issue be resolved? Let’s return to the views of Barta Maria Nopfer. Nopfer proposed several solutions, which can be summarized as follows. First, the practice of requiring genetic testing as a condition for insurance enrollment should be restricted for a certain period, and the insurance industry must strengthen education to ensure a full understanding of the scientific significance and limitations of genetic information. Second, insurance companies should be barred from accessing research records or results, and should be permitted to use only the minimum amount of medical information strictly necessary for operating the insurance system. These standards must be established through consensus among not only the insurance industry but also medical professionals and patient advocacy groups. Third, the issue of insurance companies utilizing genetic testing can only be considered after the medical utility and scientific validity of genetic information have been sufficiently verified.
However, Nophor’s proposal fails to fully reflect the reality that genetic analysis technology is advancing at a very rapid pace. The argument that judgment should be deferred until scientific value is fully proven is based on the premise that the reliability of genetic information is not yet high. However, current genomic analysis technology has achieved a significant level of accuracy in diagnosing specific genetic diseases and predicting risk, and is already being utilized in clinical practice. Of course, since most diseases are influenced not only by genes but also by lifestyle and environmental factors, one cannot determine an individual’s future based solely on genetic information. Nevertheless, the fact remains that genetic information constitutes highly sensitive personal data. Therefore, the discussion regarding the extent to which this information should be utilized and with whom it should be shared has already become a critical issue.
Nophor’s proposal to restrict access to research records and findings and to minimize access to medical information is certainly valid. However, we must also consider that, by the time such discussions take place, a substantial amount of highly accurate genetic information will already have been accumulated. Ultimately, the key issue lies not so much in whether to use genetic information, but rather in how to protect and control it.
Nofus also proposed several solutions regarding employment issues. Here, too, he argued that genetic testing should be used only when its scientific value has been sufficiently proven, and that its implementation should be postponed until then. Furthermore, he maintained that when determining whether discrimination based on genetic information has occurred, the assessment must include the description of “a person who currently has the disease or is deemed likely to develop it in the future,” and that explicit consent from the individual must be obtained before conducting genetic testing. In addition, he proposed that the scientific validity and criteria for the use of genetic testing be strictly regulated by the government. While these opinions are significant from the perspective of personal information protection, they may somewhat underestimate the pace of advancement in genetic analysis technology and its actual potential for application.
If so, how should genetic information be managed once its value has been sufficiently proven scientifically? The aspect of Nofus’s proposal that most needs refinement is the principle that the government should not, as a rule, provide individuals’ genetic information to insurance companies or employers. This is because the genetic makeup of a person already born is an inherent characteristic that cannot be altered by the individual’s will. Once disclosed, genetic information cannot be retracted, and there is a very high likelihood that it will lead to discrimination that is difficult for individuals to overcome through their own efforts. Such discrimination can undermine the fundamental principles of human dignity and equality and result in the categorization of members of society based on their innate genetic characteristics. Therefore, genetic information must be protected more strictly than any other type of personal information.
Currently, most countries classify and protect personal information according to its sensitivity, treating medical and genetic information as sensitive data requiring the strictest protection. In particular, South Korea’s “Personal Information Protection Act” defines health and genetic information as sensitive data and, in principle, prohibits their collection or use without the explicit consent of the data subject. Furthermore, such information requires even stronger protective measures than general personal information.
The Constitutional Court has also consistently maintained the position that restrictions on sensitive personal information—such as religious beliefs, physical or mental conditions, and sexual life—which lie at the core of human dignity and personality, must be subject to very strict scrutiny. These legal principles demonstrate that, at the national level, medical and genetic information are recognized as highly important forms of personal information.
In fact, many countries have established systems to prevent discrimination based on genetic information. For example, the United States prohibits discrimination based on genetic information in the areas of health insurance and employment through the Genetic Information Nondiscrimination Act (GINA), and European countries also treat genetic information as a category of personal information deserving special protection under the General Data Protection Regulation (GDPR). This international trend further underscores the fact that genetic information requires a level of protection far exceeding that of general personal information. Although insurance companies and businesses may argue that there is a need to utilize certain information for business reasons, such arguments should not be extended to the right to obtain an individual’s genetic information. Genetic information is highly sensitive data that encompasses not only current health status but also the potential for future diseases and family genetic traits. Therefore, under no circumstances should it be disclosed beyond the minimum necessary scope or used indiscriminately. Society as a whole must clearly recognize that an individual’s genetic information is not merely medical data, but information directly linked to human dignity. Furthermore, as Nofus mentioned, there is a crucial prerequisite that must be met for such a system to function properly: medical information and research data must be protected far more rigorously than they are now. While the digitization of medical information and the spread of cloud-based healthcare systems have greatly improved the efficiency of healthcare services, concerns continue to be raised that the risk of personal information leaks has increased compared to the past. Consequently, countries around the world are strengthening the personal information protection obligations of medical and research institutions and establishing stricter patient consent procedures and information management standards. Although the specific operational details of these policies may vary by country, the principles that must be universally upheld are clear. Above all else, individuals’ medical and genetic information must be protected. Only with this protection as a prerequisite can an individual’s right to self-determination be respected, and only then can we prevent a society that discriminates against people based solely on their genetic characteristics. Since South Korea also has a healthcare system with a high proportion of private medical institutions, it must continuously strengthen its information protection framework; in particular, strict management and oversight of genetic information at the national level are absolutely essential. So far, we have examined the issues raised by Barta Maria Nopfers regarding the extent to which genetic information should be shared, along with her proposed solutions, and considered areas where those solutions require further refinement. Nopfers’ insights are particularly significant because she accurately pointed out that the interests of insurance companies and corporations can conflict with individual rights, and she was an early advocate for the view that genetic information would become a major ethical issue in future society. However, her proposed solutions have limitations in that they do not fully reflect the rapid pace of advancement in today’s genomic analysis and medical technologies. While genetic information currently plays a vital role in the fields of medicine and research, it is also sensitive data that can have a profound impact on individuals’ lives. Therefore, moving forward, we must strengthen institutional safeguards for personal data protection and the prevention of discrimination just as much as we expand the potential applications of genetic information. Advances in science and technology are meant to enrich human lives; they must not become a means to justify new forms of discrimination. Moving forward, the state and society must continue to establish systems and foster a culture that allow for the safe use of genetic information while maintaining a balance between individual rights and the public interest.
