In this blog post, we will consider whether it is right for the government to collect an individual’s genetic information, focusing on the possibility of using the information and the risk of human rights violations.
In South Korea, after a birth is registered, each individual is assigned a unique number called a “resident registration number,” which is used as their personal information for the rest of their lives. This information is given to the people by the government at birth, and at the same time, the government will own their personal information. Similarly, in the near future, as seen in the movie GATTACA, the government will collect unique genetic information that is born to each individual. But is it right for the government to collect this genetic information? We need to think seriously about what information we can obtain through genetic information, how to use this information, and to what extent we can give ownership of this information to others.
This problem stems from the fact that genetic information is not simply a resident ID number that is arbitrarily assigned by the government. Even today, various companies are collecting citizens’ genetic information, including blood containing genetic information, through the National Institute of Health’s “Genetic Disease Database,” the Central Blood Center of the Red Cross, and some hospitals and social welfare institutions. In fact, 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 Bio Grand Co. to promote a project to find missing children (and their families) using genetic information. The National Forensic Service of the Prosecutors’ Office and the National Police Agency are also promoting the establishment of a genetic information bank for the purpose of scientific investigation. However, in Korea, it is still a serious problem to build a genetic database without laws or systems in place to protect individual genetic information. The reason why these three industries are cooperating to build a genetic database is that the possibility that bio-venture companies can commercially use individual genetic information cannot be ruled out. Another problem is the risk that an individual’s genetic information may be leaked during the process of collecting, analyzing, and storing the DNA information of a specific person. In addition, the genetic information databases established and operated by the state or companies themselves can be a daily threat to the human rights of citizens. With this in mind, let’s first look at how genetic information can affect our lives.
Through the collection and analysis of genetic information, we can obtain various information about our own bodies. Various companies have already started to provide DNA GPS, a service that analyzes an individual’s genetic information. This service collects DNA from an individual’s saliva or blood, analyzes the individual’s genetic sequence, and then predicts the individual’s susceptibility to disease, drug metabolism, physical characteristics, or hereditary diseases based on this information. The statistics of the data collected in this way can be used to individually focus on the gender of the individual or diseases that Koreans are particularly vulnerable to or diseases that are classified as high-risk compared to the average, and to increase the possibility of early diagnosis or treatment of diseases. This means that individual customized health diagnosis and prediction are possible, and it can make a great contribution to extending life expectancy. This can be very effective information for citizens’ health management.
However, the important point here is that we should not blindly believe genetic information. Of course, genetic information is involved in determining individual characteristics, but environmental factors also have a significant impact on the formation of the body. This is because genes only determine part of the human body, and multiple genes interact with the environment to ultimately determine the traits.
Therefore, it is not right to judge a person’s personality or constitution based solely on genetic information. For example, if DNA data is used to analyze the likelihood of a person reoffending or becoming a criminal, it is not right to treat a person as a suspect even if DNA data indicates that they are likely to commit a crime, even though they have not committed a crime. Or, when a man finds out that his girlfriend has a gene that increases the risk of breast cancer, he may be reluctant to marry her than a woman with a low risk of breast cancer. This is also a misuse of genetic information. In both cases, the man has made a premature decision based on the probability in DNA, which is based on a situation that has not even occurred. However, this is an attitude that overly overlooks the influence of environmental factors. We must be aware that genetic information can only tell us the “probability” but never the “decision” and be careful not to be discriminated against based on genetic information.
So, to whom and to what extent can ownership of this genetic information be provided? First of all, genetic information should only be used where it is absolutely necessary, and it should not be used as light information that can be easily obtained through hacking, such as a resident registration number. The information that we can obtain through a resident registration number is the year of birth, birthday, and gender. However, the moment we get someone’s genetic information, we can find out about their physical illnesses, weaknesses, and even some of their behaviors and personality traits. That’s why we shouldn’t give this information to just anyone, and we shouldn’t store it carelessly. Nowadays, the cost of genetic testing is decreasing and the tests themselves are becoming simpler, making it easier to find out and share our genetic information.
In a situation where private companies offer genetic information analysis and health management counseling as a service product, it is urgent to enact laws related to genetic information to prevent private companies from abusing the genetic information of individuals collected through counseling or possessing the information for other purposes. In addition, it is the safest way to allow the government to own only the most essential information, such as information on diseases that must be known in relation to an individual’s health, in the same context as health management matters that are currently required by schools, such as measles vaccination and tuberculosis vaccination, rather than owning all the information on genetic information. In addition, even if the government owns an individual’s genetic information, it should create a system that does not allow the information to be viewed without the individual’s permission. In other words, if a system is created that notifies the individual every time the government wants to view the information or requires the individual’s consent to use the information, the individual will be able to know when and how their information is being used, and the government will not be able to abuse it. When logging in through a system called U-OTP on a gaming site, there was a system that required you to enter a new, randomly generated four-digit number issued on your personal mobile phone, as well as your ID and password. Similarly, if personal information is available but can only be viewed with the permission of the individual, it would be a very effective and secure information storage system. It is also a good idea to “anonymize” personal genetic information when storing it in a gene bank. This is because if the patient’s identity is deleted after genetic testing of blood or tissue, the patient’s identity is not revealed and the patient can avoid damage if the information is leaked. Of course, some people may argue that the government only has information on essential matters in the first place, and that it is not actually possessing genetic information, but rather investigating only the essential matters for our community life. However, no matter how securely the government preserves personal information, there is always the risk of hacking, and once leaked genetic information can be used to reveal an individual’s identity, which is irreversible, unlike a resident registration number that is assigned arbitrarily. Therefore, South Korea must establish a system that can safely store genetic information as soon as possible to prepare for the near future.
