In this blog post, we will examine whether it is right for the government to collect personal genetic information, focusing on the potential uses of such information and the risks of human rights violations.
Currently in South Korea, when we register our birth, we are assigned a unique number called a “resident registration number,” which we use as our personal identification number for the rest of our lives. This information is assigned by the government at birth, and at the same time, the government becomes the owner of our personal information. Similarly, in the near future, as depicted in the movie GATTACA, the government will collect unique genetic information from each individual at birth. However, is it appropriate for the government to collect this genetic information? We need to seriously consider what kind of information can be obtained through genetic information, how it should be utilized, and to what extent and to whom ownership of this information should be granted.
This issue stems from the fact that genetic information is not simply a resident registration number arbitrarily assigned by the government. Even today, various organizations, including the National Institute of Health’s “Genetic Disease Database,” the Red Cross Central Blood Center, some hospitals, and social welfare institutions, are collecting genetic information from citizens through blood samples. Furthermore, the Ministry of Health and Welfare announced in a press release in January that it had signed an agreement with the Supreme Prosecutors’ Office, the Korea Welfare Foundation, and BioGrand Co., Ltd. to launch a project using genetic information to locate missing persons (families) starting in January of this year. Additionally, the National Forensic Service under the Prosecutors’ Office and the National Police Agency are also pursuing the establishment of a genetic information bank for forensic purposes. However, building a genetic database without adequate laws or systems in place to protect individuals’ genetic information is a serious issue. This is because the collaboration between these three sectors to build a genetic database could potentially allow biotech companies to commercially exploit individuals’ genetic information. There is also the risk that genetic information could be leaked during the process of collecting, analyzing, and storing DNA information from specific individuals. Additionally, genetic information databases established and operated by the state or corporations could themselves pose an everyday threat to citizens’ human rights. With this awareness, let us first examine how genetic information could potentially impact our lives.
Through the collection and analysis of genetic information, we can gain various insights into our own bodies. Several companies have already begun offering DNAGPS services, which analyze an individual’s genetic information by collecting DNA from saliva or blood, analyzing the individual’s genetic sequence, and then predicting disease susceptibility, drug metabolism, physical characteristics, or genetic disorders based on this information. By analyzing the statistics of the collected data, individuals can undergo targeted screenings for conditions specific to their gender or diseases that Koreans are particularly vulnerable to, or those classified as high-risk compared to the average population. This can enhance the possibility of early disease diagnosis or treatment. Ultimately, this enables personalized health diagnostics and predictions, which can significantly contribute to extending lifespan. Such information can be highly effective for managing citizens’ health.
However, it is important to note that genetic information should not be blindly trusted. While genetic information does play a significant role in determining personal characteristics, environmental factors also have a substantial influence on physical development. Genes only determine a portion of the human body, and it is the interaction between multiple genes and the environment that ultimately determines physical traits.
Therefore, it is incorrect to make definitive judgments about an individual’s personality or constitution based solely on genetic information. For example, even if DNA data suggests that someone has a higher likelihood of committing a crime, it is unjustified to label them as a suspect before they have actually committed any crime. Similarly, if a man learns that his girlfriend has a gene that increases her likelihood of developing breast cancer, he may hesitate to marry her compared to a woman with a lower likelihood of developing the disease. This is also an example of misusing genetic information. In both cases, judgments are made prematurely based solely on probabilities encoded in DNA regarding situations that have not yet occurred. However, this approach overly disregards the influence of environmental factors. We must recognize that genetic information merely indicates probabilities and cannot determine outcomes, and we must be cautious to avoid discrimination based on genetic information.
Then, to whom and to what extent should ownership of genetic information be granted? First and foremost, genetic information must be used only where absolutely necessary and should not be treated as lightweight information that can be easily obtained through hacking, like a resident registration number. The information we can obtain through a resident registration number is limited to the year of birth, date of birth, and gender. However, once someone gains access to genetic information, they can uncover a person’s physical illnesses, weaknesses, and even aspects of their behavior or personality. Therefore, this information must never be disclosed to anyone, and it must be stored securely.
With the cost of genetic testing decreasing and the testing process itself becoming simpler, our genetic information is becoming easier to obtain and share. In a situation where private companies are offering services such as genetic analysis and health management consultations, it is urgent to establish strict laws related to genetic information to prevent private companies from misusing or owning the genetic information collected through consultations for other purposes.
Additionally, rather than owning all genetic information, the government should only possess information that is absolutely necessary for an individual’s health, such as details about diseases that require mandatory prevention measures, similar to how schools currently administer mandatory vaccinations like measles and tuberculosis shots. Furthermore, even if the government owns an individual’s genetic information, it must establish a system that prevents unauthorized access to that information without the individual’s consent. For example, if the government is required to notify the individual whenever it wishes to access the information or obtain the individual’s consent before using it, the individual would be able to monitor how their information is being used, thereby preventing the government from misusing it. In the past, some game sites used a system called U-OTP, where users entered a randomly generated 4-digit number sent to their phone, along with their ID and password, to log in. Similarly, if personal information is stored but can only be accessed with the individual’s permission, this would be an effective and secure information storage system. Additionally, anonymizing genetic information stored in genetic banks or similar institutions is another good approach. This is because if all patient identities are deleted after genetic testing using blood or tissue, and the genetic information cannot be traced back to the individual, it would prevent harm from reaching the patient in the event of a data breach. Of course, some may argue that having the government retain only essential information is not equivalent to owning genetic information, but rather collecting only what is necessary for communal living. However, even if the government ensures the secure storage of personal information, the risk of hacking always exists. Once genetic information is leaked, unlike a randomly assigned resident registration number, it can result in the irreversible disclosure of an individual’s personal identity. Therefore, South Korea must urgently establish a system to safely store genetic information and prepare for the near future.
