“Biodata is a national strategic asset. If we don’t build it now, we’ll never be able to build it again.”

“This project to build big data on the life information of 1 million citizens is a national strategic asset project that will determine the fate of the Republic of Korea. It is securing important national assets on par with the military, food, communications, and underground resources. In order to catch up with the leaders who are far ahead, such as the US, UK, Japan, and China, and to take advantage of our own unique strengths, cooperation from the government, medical institutions, and industries, as well as the consent of the people, are absolutely necessary.”

Baek Long-min (68), head of the National Integrated Bio Big Data Construction Project Team, said, “Considering the importance of the project and the gap with the leading runner, every minute and second is precious.” He added, “The government, experts, and companies have made various preparations before the project, but we are far behind the leading countries. Therefore, elite agents from each government ministry and project team and private sector experts are competing against every second to lay the foundation for the project in each field.”

Director Baek, who was appointed as the head of the division when the project was launched in earnest in April, said, “The division is particularly working hard to devise ways to elicit the public’s understanding and agreement,” adding, “We are actively gathering opinions on how to explain it in an easy and persuasive way and what benefits can be provided to participants.”

This project aims to secure biomaterials and information of 772,000 people by 2028 in the first phase, produce related data, establish a data bank and bio bank, and secure biodata of 1 million people by 2032. After passing the preliminary feasibility study in June last year, a budget of 606.6 billion won was set, and inter-ministerial departments including the Ministry of Health and Welfare, the Ministry of Science and ICT, the Ministry of Trade, Industry and Energy, and the Korea Disease Control and Prevention Agency are participating. The Korea Health Industry Development Institute is in charge, and ‘brain institutions’ such as the National Center for Bioresources, the Korea Health Industry Development Institute, and the Korea Institute of Science and Technology Information are in charge of specific projects.

The business group collects blood, tissue, urine, etc. samples with the consent of the participants, and analyzes the whole genome (WSG) of 340,000 of them and stores them in a data bank. It also receives a questionnaire and collects necessary medical information. It collects information by dividing it into patients with rare diseases, patients with severe diseases, and the general public, and the type of information varies depending on the target group. It also collects public data from the National Health Insurance Corporation, Health Insurance Review & Assessment Service, Statistics Korea, etc. It manages and operates it as a biobank and a databank, and provides desired information to domestic and foreign researchers. Some of the research results are included in the bank again and circulated virtuously. It is to improve treatment guidelines by applying various technologies including AI, making ‘customized precision medicine’ possible, and to build assets that can be applied to the industry. In the process, it plans to provide various benefits to information providers, including providing health management information based on the results of genome analysis. See the graphic below

The business division will be in charge of comprehensive tasks such as ▲establishing a business support organization ▲securing participating organizations ▲supporting genome analysis and data technology ▲establishing and operating data bank and biobank servers. Director Baek said, “In order to obtain the public’s consent, we are paying great attention to details such as making consent forms easy for even second-year middle school students to understand and making related videos.”

Dr. Baek, a world authority on facial deformity treatment, is also recognized for his outstanding abilities in medical information and hospital management, and is considered the right person for this business. Along with his older brother, Dr. Baek Se-min (deceased in 2022), who is called the pioneer of Korean plastic surgery, he received the Vietnam National Friendship Medal and the Audrey Hepburn Humanitarian Award for his contributions to restoring smiles to 2,000 Vietnamese children with facial deformities by treating them for free. He also served as vice president and president of Seoul National University Bundang Hospital, contributing to its growth into a world-class smart hospital. As the representative of Health Connect, a joint venture between Seoul National University Hospital and SKT, he gained experience in the medical information industry, and served as president of the Korean Society of Medical Informatics, chairman of the Health Insurance Digital Medical Expert Evaluation Committee, and head of the AI ​​precision medical solution Doctor Answer 2.0 business unit.

– I kept emphasizing that this project was a national strategic asset construction project… .

“Yes. Biodata will become one of the most important strategic assets of a country in the 21st century. It will be the foundation for personalized health for the people, and it will become basic research data for academia and industry. It will not be a data bank that is fixed once it is built, but a vital information bank that will continue to be upgraded as it is utilized. Countries such as the US and the UK, which have recognized its importance, have started early, so their task is to reduce the gap.”

-How did the countries selected for bio-big data get started, and what is the gap?
“Before explaining this, let me give you some background. The establishment of bio-big data in each country was born at the intersection of two major trends in world history: the ‘genomic revolution’ and the ‘digital transformation (D/X)’. The genome revolution began in 1990, and the ‘Human Genome Project’, which was released in 2003, ignited the fuse. Centered around the U.S. Department of Energy and the National Institutes of Health, a joint research team from six countries, including the U.K., Japan, Germany, France, and China, began with a budget of 3 billion dollars (approximately 4.165 trillion won), and announced the results two years ahead of schedule due to competition and cooperation with Celera Genomics, a private company led by ‘heretic in the biotechnology world’ Craig Venter. Currently, the cost of analyzing a person’s entire genome has dropped below 100 dollars (approximately 138,000 won), making various studies and businesses possible. In addition, the technology to collect and analyze various data has rapidly developed due to the digital transformation. “The medical community has begun to fully reveal the secrets of the human body by analyzing clinical and genetic information, making precision medicine and personalized health management possible.”

-It seems like you are saying that the countries that recognized its importance in advance took the lead… .

“That’s right. The UK, a leader in biotechnology, launched the ‘UK Biobank’ in 2006. It is a project with an investment of 537.8 million pounds (approximately 966 billion won), and in 10 years, it secured 500,000 people’s genome information, which was released to scientists around the world last year. Researchers can use this data by going through a separate application approval process and paying a usage fee. The US started it in 2015 when President Barack Obama announced the ‘Precision Medicine Initiative’ in his State of the Union address. The following year, the ‘21st Century Cures Act’ passed Congress, and a budget of 1.5 billion dollars (approximately 2 trillion won) was allocated, and 215 million dollars (approximately 300 billion won) is invested annually. The ‘All of Us’ project led by the US National Institutes of Health (NIH) plans to collect biodata of 1 million people and has currently secured data for 650,000 people. ‘Biobank Japan’ in neighboring Japan, which started early in 2002, has secured data for 300,000 people. Finland secured blood samples and genome information of 500,000 people, or 10% of the population, through the ‘FinnGen’ project, and Estonia has banked genome information of 200,000 people, or 15% of the population.”

-It is interesting that the precision medicine promotion plan and bio big data are linked in the United States.

“Big data, which combines personal genome data, clinical information, and various health information produced in daily life such as diet and exercise habits, is not only a research material for new drugs or treatments, but also changes the paradigm of medicine in that it enables personalized treatment. It is possible for a doctor to diagnose, ‘Based on your genome analysis results, I analyzed your past medical history and lifestyle habits, and if you continue like this, you have a 65% chance of developing diabetes within 3 years, but if you change your diet like this and exercise like this, your chance of developing the disease will drop to less than 9%. ’”

-I wish that could happen, but on the other hand, it sounds like something that will happen in the distant future.

“Precision medicine is also in progress. When I was studying medicine, lung cancer was classified into three types based on size and shape, and it was later further subdivided. However, as genetic research has accumulated, dozens of types have been discovered. The true nature of each type of lung cancer is becoming clearer. In the past, if the cancerous area could not be removed through surgery, we had to rely on anticancer drugs that indiscriminately bombarded both normal and cancer cells, but now it is possible to attack only genes related to cancer. As the target of the disease became clearer, not only treatment but also prediction and management have advanced. A representative example is Angelena Jolie, who discovered a mutation in the BRACA (BReAst CAncer Susceptibility) gene in her genome and underwent preventive mastectomy. In short, the paradigm of disease and medicine has begun to change.”

-Looking at the UK Biobank you mentioned earlier, it seems like the leading countries are already reaping the fruits of their labor in industry and research… .

“In the UK, researchers are being charged a considerable fee for making data public. Above all, since the bank deliberates on research objectives and shares results, it will naturally become a hub for future precision medicine. This is also why advanced countries, including the US, are competing with all their might to take the lead in biodata. It is not easy for us, as we started late and have to catch up with advanced countries with insufficient costs. However, we have accumulated knowledge, know-how, and the passion of our researchers. If we can’t do it now, we will never be able to do it, and we will have no choice but to become a dependent country in bioinformation.”