The original statement is released in April 2022. The English version is translated by Mina Chen and revised by Xinyi Liao, Kuan-Ju Chou.
Taiwanese people's health insurance data has been provided for academic research by the Ministry of Health and Welfare without consent for years. Worse still, when a small number of people filed for opting out, the Ministry had their requests denied. Depriving citizens of prior consent and post-facto control over their own medical data is tantamount to forcing those making use of the national health insurance to render up their data unconditionally for secondary use. Enacted upon the professed normative value of "preventing infringement of personality rights and promoting reasonable use of data" and yet deficient and outdated in substance, the "Personal Data Protection Act" fails to protect citizens from privacy infringement and opens the floodgate to secondary use of data.
As a coalition that has long concerned ourselves with this litigation, we have never requested to abort all studies involving health insurance data. In contrast, we expect the healthcare data study in Taiwan to respect all research participants, particularly by prioritizing their right to privacy over the interest that could be harvested from their personal data. The current Personal Data Protection Act does not define the scope and level of public interest for off- purpose usage, nor does it delineate the due process of public interest review. Additionally, the academic research itself may not contain public interest. Suppose healthcare data research in Taiwan can provide a clearer picture of public interest and more opportunities to interact with the study participants, citizens' understanding of the research demand will develop. In that case, the mutual trust between researchers and study participants can increase, thus, promoting a data usage model that protects fundamental rights.
Health insurance data that has gone through de-identification process (in the context of Taiwanese Personal Data Protection Act) is potentially reversible via linkage
First, we need to clarify that the past health insurance data that has gone through some degree of de-identification process is nonetheless "individual data", as opposed to “aggregate data”, deployable for personable identification. Health insurance data can be linked to other data from the Ministry of Health and Welfare. (i.e., the mentally and physically disabled file, the domestic violence report file, the sexual assault report file, and the vulnerable children) Moreover, it can also be requested to be associated with external data or data from other agencies. The University of Melbourne has managed to re-identify data subjects of the Australian health insurance data undergone de-identification process. Researchers can identify individuals behind data simply with the connections of publicised data without decryption or using hacking techniques. Even as Taiwan prohibits the export of raw data, the risk of re-identification may escalate as the sources and types of connected data increase and the unspecified research purposes. Taiwan citizens can not exercise the right of prior consent and are even prohibited to opt- out of the research.
How come opt-out requests were denied when it comes to health insurance data research while precedents of permittance had been set by other researches of critical public interest?
It's practicable to recognize the right to opt-out from research of public interest. The study within which the Ministry of Health and Welfare randomly selected blood serum samples from the blood centers to monitor the pandemic allowed the donors to opt-out from the study. The National Health Service in the United Kingdom has allowed people to opt out since 2018, and even then the withdrawal rate is less than 3%. The data integrity and administrative efficiency that researchers and officials are respectively vigilant about should be based upon public support of the research garnered through expounding its significance for public benefit, and its emphasis on risk management and data protection.
Some people have argued that if people are allowed to opt-out from the health insurance database, the study result may be distorted, rendering the credibility of the scientific evidence seriously undermined. We consider this argument unfounded and does not address whether the current academic studies all use the health data of the "entire population." Is the practice of “sparing no sample” necessary for each and every big data project? And "what types of academic research" are important enough to offset the price of mandating all citizens to render up their health insurance data? The assertion that recognizing data subjects' right to opt-out undermines the integrity of big data research is not based on solid empirical evidence and may be extended unlimitedly. This may not be a commendable mindset for engaging civil society in rational discourse on human rights issues in civil society by simply putting on a label of influencing scientific research.
The spirit of national health insurance is based on social justice. It should not force all citizens to join research nor discriminate against individuals who drop out of the study. In addition, to establish the regulations on secondary use of data and to delineate the scope of the public interest concerned are the more demanding tasks of this constitutional interpretation. The current Personal Data Protection Act does not maintain the privacy protection effectively, the misuse of the National Health Insurance Database reflects the flaws in PDPA. It is one of the examples, but not the only one. As a civil society coalition that has been concerned about democracy and human rights, we hope that people from all backgrounds can join us in understanding the constitutional interpretation for the National Health Insurance Research Database (NHIRD).
【Co-founding groups】 Taiwan Association for Human Rights, Human Subject Protection Association in Taiwan, Taiwan Association for Psycho-Social Rehabilitation, Taiwan Women’s Link,Civic Coalition for Monitoring National Health Insurance, Persons with HIV/AIDS Rights Advocacy Association of Taiwan, Economic Democracy Union, Taiwan Labour Front
【Petition Groups】Open Culture Foundation, Taiwan Alliance to Promote Civil Partnership Rights, Covenants Watch, Taiwan Occupational Safety, and Health Link, The League for Persons with Disabilities, Taiwan Organizations for Disadvantaged Patients, Taiwan Forever Association, The Garden of Hope Foundation
