Just as each person in South Korea is given a unique social security number, there is a possibility that unique genetic information could be collected by the government in the future, and the ethical, social, and legal issues of collecting and utilizing genetic information, as well as the ownership and safe storage of genetic information, need to be discussed in depth.
Currently, in South Korea, after registering our birth, each of us is given a unique number, called a “resident registration number,” that we carry with us throughout our lives. Similarly, in the near future, as seen in the movie GATTACA, the government will collect unique genetic information that each person is born with, but is it right for the government to collect this information? We need to think seriously about what our genetic information can tell us, how it should be used, and to what extent it should be owned.
These issues start with the fact that genetic information is not just a social security number arbitrarily assigned by the government. Various entities are currently collecting genetic information from citizens today, including the National Institutes of Health’s “Genetic Disease Database,” the Red Cross Central Blood Bank, and some hospitals and social service organizations that obtain blood containing genetic information. The Ministry of Health and Welfare even announced in a press release in January that it has “signed an agreement with the Supreme Prosecutors’ Office, the Korea Welfare Foundation, and Biogrand Co. Ltd. to carry out a project to find missing persons (family members) using genetic information.” The National Forensic Science Research Center of the Supreme Prosecutors’ Office and the National Police Agency are also promoting the establishment of genetic information banks for the purpose of scientific investigation. However, building a genetic database is a serious issue as Korea does not yet have a law or system in place to protect individual genetic information. The reason why these three industries are collaborating to build a genetic database is that it is possible that bio-venture companies could commercially exploit individuals’ genetic information. There is also a risk that individuals’ genetic information could be leaked during the process of collecting, analyzing, and storing DNA information. In addition, genetic information databases built and operated by the state or companies themselves could pose a daily threat to citizens’ human rights. With these issues in mind, let’s start by understanding how genetic information can affect our lives.
The collection and analysis of genetic information can reveal a wide range of information about our own bodies. Various companies have already started to provide DNAGPS, a service that analyzes an individual’s genetic information by collecting DNA from saliva or blood, analyzing the sequence of the individual’s genes, and predicting disease susceptibility, drug metabolism, physical characteristics, or hereditary diseases. Through the statistics of these collected data, it is possible to individually focus on diseases that Koreans are particularly vulnerable to, such as their gender, or diseases that are classified as higher risk than the average, and increase the possibility of diagnosing or treating diseases at an early stage. In other words, it is possible to make personalized health diagnosis and prediction, and contribute to the extension of life, which can be very effective information for citizens’ health management.
A word of caution, however, is that genetic information should not be taken at face value. While genetics plays a large part in determining an individual’s characteristics, environmental factors also play a significant role in shaping the body. This is because genes only determine part of the human body, and many genes interact with the environment to ultimately determine traits.
For example, when DNA data is used to analyze the likelihood of recidivism or criminality, it is unjustified to treat a person as a suspect who hasn’t committed a crime, even if the DNA information suggests that they are more likely to commit a crime. Or, if a man learns that his girlfriend has a gene that predisposes her to breast cancer, he may be more hesitant to marry her than a woman with a lower risk of breast cancer. In both cases, you’re making a judgment about something that hasn’t happened based on the probabilities in your DNA, but that’s an attitude that overlooks the influence of environmental factors. We need to realize that genetic information can only tell us “probabilities” and never “decisions,” and we need to be careful not to discriminate based on genetic information.
So, where do we draw the line and who should have ownership of this genetic information? I think the biggest key is that genetic information should only be used where it is absolutely necessary and should not be used as a lightweight piece of information that can be easily hacked to obtain it, such as a social security number. With a social security number, all we know is the year and month of birth, birthday, and maybe gender. But the moment you get your hands on someone’s genetic information, you can learn about their physical ailments, their weaknesses, and even some of their behaviors and personality traits, which is why it shouldn’t be given away to just anyone, and why it shouldn’t be stored in a sloppy way. Nowadays, genetic testing is becoming less expensive and the tests themselves are becoming more streamlined, so our genetic information is becoming easier to find out and easier to share.
With private companies offering genetic information analysis and health management counseling as a service, it is urgent to enact a thorough genetic information law so that private companies cannot abuse the genetic information collected through counseling or possess the information for other purposes. In addition, the safest way to do this is to ensure that the government does not own the entire genetic information, but only the most essential parts of the information, such as information about diseases that are essential to an individual’s health, in the same vein as health care that is currently required in schools, such as measles vaccinations and tuberculosis shots. Furthermore, even if the government does own an individual’s genetic information, it must create a system that does not allow the government to access the information without the individual’s permission. In other words, if the individual is notified whenever the government tries to access the information, or if the individual has to give permission before the information can be used, the individual will be able to understand when and how their information is being used, and the government will not be able to abuse it. There was a system called U-OTP on a gaming site where when you log in, you enter a random four-digit number that is newly issued to your phone, and then you enter a username and password. Similarly, if you can keep an individual’s information but only allow them to view it with their permission, it will be a very effective and secure system for storing information. Also, it is a good idea to “anonymize” an individual’s genetic information when it is stored in a gene bank. This is because if a genetic test is performed on blood, tissue, etc. and the patient’s identity is removed so that they don’t know whose genes it is, it prevents them from being harmed in the event of a breach.
Of course, some people may argue that having the government possess only essential information in the first place is not really owning genetic information, but rather investigating only the essentials for us to live together as a community. However, no matter how securely the government keeps personal information, there will always be the possibility of hacking, and genetic information, once leaked, can become an irreversible disclosure of one’s identity, unlike a randomly assigned social security number. Therefore, Korea should prepare for the near future by establishing a system to keep genetic information safe as soon as possible.
