Launch of the Bio Big Data Construction Pilot Project Steering Committee
Established genomic data for over 20,000 people over two years


The Ministry of Science and ICT, the Ministry of Health and Welfare, and the Ministry of Trade, Industry and Energy announced on the 23rd that they will proceed with a pilot project to build a national bio big data system starting this year.

To this end, the Steering Committee, Steering Committee, Secretariat, Expert Committee, and five government-funded research institutes (Korea Centers for Disease Control and Prevention, Korea Research Institute of Bioscience and Biotechnology, Korea Institute of Science and Technology Information, Korea Institute of Industrial Technology Evaluation and Management, and Korea Health Industry Development Institute) form a consortium to support the operation of the pilot project.

During the pilot project for the next two years (2020–2021), 5,000 patients with rare diseases will be recruited annually, and in conjunction with leading projects such as the Korean Genome Epidemiology Project and the Ulsan 10,000 Genome Project, 5,000 patients will also be recruited annually, with plans to build clinical information and genomic data for a total of more than 20,000 people.

In the case of rare diseases, 16 rare disease collaborating institutions nationwide are designated to collect clinical information and specimens from patients with rare diseases, taking into account patient accessibility and clinical experience.

For projects where clinical information or genomic data has already been secured, 'leading projectWe plan to form a 'Committee' to establish standards for linkage with the bio big data construction pilot project.

Genomic data is scheduled to be produced by genomic analysis institutions and the Korea Biomedical Information Center (KOBIC) through 'whole-genome analysis (a method of analyzing the entire genome)' and 'variant analysis (a method of identifying different nucleotide sequences by comparing with a standard genome),' respectively.

We plan to support the sharing and utilization of the collected clinical information and produced genomic data in principle among the Korea Centers for Disease Control and Prevention, KOBIC, and the Korea Institute of Science and Technology Information (KISTI).

It supports various studies by providing information to researchers in industry, academia, research institutes, and hospitals through the Clinical Interpretation Research Network (CIRN), and assists in the diagnosis and treatment of patients with rare diseases through diagnostic reference reports.

We plan to utilize this to support the localization of materials, parts, and equipment related to genomic data analysis that are currently dependent on overseas sources, as well as the development of new drugs and medical devices, and to expand related services, such as digital health devices linked to personal health information.

To address concerns regarding the leakage of personal information resulting from the collection of sensitive clinical and genomic data, we plan to ensure thorough data management by assigning individual IDs and establishing closed networks at the collection and production stages.

The plan for the pilot project was decided at the first meeting of the 'National Bio Big Data Construction Pilot Project Promotion Committee' held on March 12. The steering committee was composed of a total of 20 members, including Chairman Song Si-young (Professor at Yonsei University Severance Hospital), as well as representatives from the medical, academic, industrial, and patient groups.

Through this pilot project, the construction of bio big data is expected to begin in earnest in Korea, laying the foundation for the biohealth industry, which offers significant first-mover advantages.