An Interview with Chung-Hsi Lee:Using data governance to build precision health

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This year, to promote the development of the 2030 Health for All initiative, the government formulated a 4-year “Sustainable Big Data Platform for Precision Health” project to integrate multiple databases across different medical institutions and promote development of the medical and health industries. However, it is important to consider the balance between of personal data protection and value-added data applications. Professor Chung-Hsi Lee at the Taipei Medical University Graduate Institute of Health and Biotechnology Law has proposed that medical technology in the era of artificial intelligence can only move forward if an authority dedicated to personal data protection is established and the right to personal privacy is upheld.

Lee agreed to an interview with the Ministry of Science and Technology (MOST) Center for Global Affairs and Science Engagement (GASE) to share an international case of gradual establishment of data governance. In recent years, Lee’s studies have focused on precision health, privacy protection, and ethical issues in the use of genetic information.

Smart medicine and precision medicine have developed into precision health, whose foundational principle is the collection and analysis of data. In the interview, Lee indicated that it is not possible for a person to visit the same hospital throughout their entire lifetime, and sharing medical record data between different medical institutions can lead to issues with personal data protection. Thus, establishing open and comprehensive data privacy framework is necessary for the success of policy implementation.

Lee said that data use in Taiwan is primarily authorized through a “consent form” model. Whereas, common international practice is based on two types of approaches, to either data protection or privacy protection, a data governance system can be gradually established by forming a data ethics commission or a model in which participants have the right to access their own information. 

Medical history authorization: The US information access system

For example, starting in 2015, the United States National Institutes of Health (NIH) launched the Precision Medicine Initiative that includes the Privacy and Trust Principles. This research program aims to assemble a cohort of one million or more participants who will voluntarily provide samples, medical histories, lifestyle habits, family histories, and even data from wearable sensors, which will be uploaded to a digital platform for research purposes. The NIH also emphasizes to participants that this project is a partnership between the researchers and participants that participants have the right to choose to participate in data and ethical governance and can request results gathered from research that uses their data.

At the end of 2020, the NIH announced the genetic analysis results from this project and released biosample data to 270,000 participants for the first time. Sharing this information with participants allows them to understand their own health risks, and also provides them with incentives to encourage long-term engagement in this project.

An authority dedicated to personal data protection: balancing privacy with data usage

The January 2021 issue of The Economist published the “Personalised Health Index” for the Asia-Pacific region. Taiwan was listed second in the overall ranking, mostly due to its robust health insurance, cancer database, and cutting-edge digital infrastructure. Among these factors, the long-term accumulation of health insurance information in Taiwan is an important resource for the development of precision medicine in the age of AI. However, there is still a big debate to date on whether the health insurance data currently belongs to individual citizens or the government, and whether these data can be utilized for further purposes. This is similar to knowing where to find buried treasure but with no way to excavate it.

In his interview, Lee indicated that public agencies worry about violating the Personal Data Protection Act, causing disputes over invasions of privacy, creating many policies that are difficult to resolve, and making it difficult for valuable data to be transformed into the foundation for public governance. Therefore, the establishment of an authority dedicated to personal data protection is imperative.

Lee said that the balance between personal data protection and the public interest will always be fraught with differences in opinion. Once an independent authority dedicated to personal data protection is established, it should be responsible for reviewing and safeguarding the scope of personal data use. The standards for de-identification and complete anonymization must also be clearly specified. So there will be guidelines and mechanisms to follow for handling once there is a dispute. This will enable a fair and open integration of smart medical data, thereby creating new value for health data that serves the public good.

Legal Challenges and Prospects for Taiwan’s Development of Precision Health

Precision health cannot be achieved by the combination of technology and medicine alone, but requires transformation of the overall medical service model, which also means a paradigm shift in the concepts of laws and rights. Based on this, the legal sector must first solve issues regarding the transfer and utilization of personal health data. Therefore, restrictions in personal data protection laws and their roles in the medical law need to be clarified. 

Legal issues of the subject are gradually being picked up and discussed, so a brief structure of legal obstacles can already be defined. However, the elimination of these obstacles must be based on social consensus. Lee stated that a lack of social consensus to push for institutional changes has persisted in Taiwan, so it is crucial that the government unleashes digital governance capabilities and establishes good public trust through the policy practices.

The upcoming establishment of the “Ministry of Digital Development” should be a great opportunity for Taiwan. Lee indicated that a digitalized government guiding the medical system to integrate digital technology will enable Taiwan's medical services and technology industries to smoothly transform into a new paradigm of precision health.

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