This blog post examines the sensitivity of genetic information and the scope of its sharing, delving deeply into the complex reasons why the right to protect one’s privacy conflicts with the right to know about one’s own health information.
What if a society existed where a newborn’s entire life could be predicted from a single drop of blood, and individuals were evaluated solely based on their genetic information? With the rapid advancement of genetic engineering today, modern society is also reaching an era where, much like the world depicted in the movie “Gattaca,” a single drop of blood can reveal all genetic information, enabling predictions about lifespan or the likelihood of disease onset based on that data. In the near future, it is highly likely we will see societies implementing personalized medicine or early disease prevention using such genetic information. However, precisely because accessing an individual’s genetic information carries significant potential for ethical issues and discriminatory concerns, many people express the view that access to genetic information should be regulated or even opposed entirely. Nevertheless, humanity has already entered the irreversible era of genetic engineering. Rather than simple rejection, careful consideration and preparation are necessary. This essay aims to meticulously examine the arguments of those opposing access to genetic information (hereafter referred to as the ‘opponents’) and critically evaluate their basis. Rather than merely rejecting access to genetic information, it would be more desirable to explore its positive potential applications and prepare for the new era ahead.
The opponents’ first argument is based on the premise that genetic determinism or genetic reductionism is not true. They contend that inaccurate predictions or warnings based on genetic information can have serious adverse effects, such as diminishing an individual’s will to live. For example, just because a person possesses a specific genetic material that may cause liver cancer does not mean that person will inevitably develop liver cancer in the future. We must clearly acknowledge that a certain gap exists between genotype and phenotype. For this reason, genetic testing often carries the nature of a self-fulfilling prophecy. A self-fulfilling prophecy refers to the phenomenon where the belief that a prophecy will come true actually causes that prophecy to manifest in reality. That is, it describes a situation where a person, upon receiving counseling results indicating a high probability of developing liver cancer in the future, becomes overwhelmed by shock and anxiety, ultimately leading to the actual onset of liver cancer. Furthermore, even if liver cancer does not develop, the person may live under constant anxiety. If they feel there are no preventive measures or treatments available, they could lose their will to live.
However, the claim that genetic information alone causes psychological distress or loss of will to live is, in light of the facts, merely an overinterpretation. According to the World Health Organization (WHO), the lifetime probability of developing cancer for people worldwide is estimated at approximately 25%, and about 16.7% of global deaths are due to cancer. Can we say that people exposed to such statistics immediately fall into anxiety and lose their will to live starting today? As opponents argue, genetic determinism or genetic reductionism is not true. Genetic information can only provide us with warnings about the potential for future diseases; it never functions as a prophecy. Just because someone carries a genetic factor that can cause liver cancer does not mean they immediately enter the progression stage of liver cancer. Moreover, the concept of self-fulfilling prophecy lacks scientific persuasiveness. For example, when comparing someone diagnosed with a high risk of liver cancer who quits drinking to prevent it, and someone judged by genetic information to have a low risk who continues drinking, can we definitively assert that self-fulfilling prophecy will operate, causing the former to show a higher incidence rate? Conversely, accessing genetic information allows us to design and manage our health more proactively. Starting health management only after disease onset is too late. In an era where more people are practicing exercise, dieting, quitting smoking, and abstaining from alcohol, it is questionable whether genetic information that warns of future disease risks truly saps individuals’ will to live and plunges them into anxiety. The potential for personalized medicine based on genetic information to improve human life far outweighs the anxiety from self-fulfilling prophecies allegedly caused by genetic information.
The second concern raised by opponents is the fear of privacy infringement. The human genome contains not only an individual’s current state but also their entire blueprint for the future. Unlike conventional medical records, which reflect only a patient’s past condition, the genetic information encoded in DNA molecules encompasses an individual’s future characteristics. Furthermore, an individual’s genetic information cannot be definitively considered purely private property. This is because an individual’s genetic information also shares a significant portion of the genetic information of their family members. Therefore, if an individual’s genetic information is disclosed, there is a possibility that their family’s genetic information will also be automatically disclosed. For this reason, there is a view that each individual possesses a ‘right not to know’ regarding the human genome.
Of course, arbitrarily disclosing genetic information without family consent could constitute a clear invasion of the family’s privacy. However, denying an individual access to their own genetic information based on the potential invasion of family privacy or the argument that genetic information is not exclusive private property is a clear violation of the right to know itself. The opposing argument also, like the previous one, invokes the self-fulfilling prophecy. It suggests that if one family member learns of a potential disease risk through genetic information, even family members who have not undergone genetic testing may become gripped by anxiety, ultimately leading to a self-fulfilling prophecy. However, as mentioned earlier, anxiety based on this self-fulfilling prophecy cannot serve as a valid justification for completely blocking access to genetic information. If this logic were accepted and access to genetic information were blocked, it would lead to the contradictory situation where even mentioning family history itself would have to be considered an invasion of privacy due to a similar structure.
While the first two arguments of the opposition were discussed at the individual and family member level, the third claim concerns the potential for interest groups to discriminate based on genetic information. Employment and insurance issues are prime examples. Opponents worry that insurance companies could refuse coverage to people with specific genetic material based on genetic information. However, insurance companies have long used actuarial tables to assess individual risk. While cases of restricted insurance enrollment based on genetic information may increase, insurance products will simultaneously become more specialized. Individuals will no longer need to purchase insurance for conditions deemed less likely to develop based on their genetic profile. Therefore, the controversy over discrimination due to genetic information in insurance matters is a problem that can be adequately resolved.
In employment, concerns have been raised that companies could exclude capable applicants from hiring based on genetic defects, citing potential future health issues. In South Korea, pre-employment health screenings have already been abolished due to concerns they cause employment discrimination. Requiring genetic information during the hiring stage would clearly constitute illegal conduct. However, whether companies requesting genetic information after hiring could be problematic requires more careful consideration. This is because requesting genetic information implies that the company is focusing on the employee’s future health status rather than their current health status. If companies exist that seek to exclude applicants whose future health is uncertain due to genetic information issues, could an ideal candidate who possesses genetic information indicating zero risk for all diseases the company requires, while also possessing the desired abilities, actually exist? From a company’s perspective, if presented with a choice between a candidate with excellent future health prospects but lacking in ability, and a candidate with uncertain future health but outstanding ability, it would be more rational to select the latter and then strengthen work schedule adjustments and health management programs. In other words, companies are more likely to choose to utilize the genetic information of their employees as a welfare measure to enhance work efficiency. Canceling employment offers based on genetic information may actually be counterproductive to the company’s interests. While the potential for discrimination based on genetic information in insurance and employment is real, practical solutions exist, and these issues are unlikely to reach a level that shakes the very foundations of society.
However, a more fundamental question arises during discussions about insurance and employment: how to address the inherent imbalance of genetically determined traits. This is a complex realm tied to social justice and distribution structures, not easily resolved. The perspective that blames genetic engineering for this imbalance should be avoided. Opponents, while acknowledging that genetic reductionism is not true, sometimes reveal the irony of exhibiting genetic reductionist thinking themselves. While it is true that genes significantly influence individuals, the fact that environment and other factors exert equally important influences has already been demonstrated through various studies on identical twins. Attributing an individual’s talents solely to genetics diminishes their personal effort and surrounding circumstances. Similarly, explaining health status solely by genetics without considering lifestyle influences is also a genetic reductionist mindset.
Ultimately, the era of genetic engineering has already arrived, and this change is irreversible. In future society, access to personal genetic information will become increasingly common. Therefore, rather than prohibiting access to genetic information out of vague fear, the attitude of South Korean citizens that aligns with the tide of the genetic engineering era would be to actively utilize genetic information to strengthen personal health management and establish appropriate social distribution mechanisms for those experiencing genetic misfortune. This approach will serve as a crucial foundation for humanity to design and respond to the future more stably amidst the waves of change.
