National Health Insurance (NHI) data on private citizens have for years been illicitly used for reasons other than their original purpose, legislators and human rights groups representatives said yesterday, calling for the passage of a law governing the use and protection of personal health information.
At a public hearing concerning the government’s “value-added application” of information about citizens’ medical records, Democratic Progressive Party legislators Lin Shu-fen (林淑芬) and You Mei-nu (尤美女) said NHI officials have been providing such information to the National Health Research Institute and the Ministry of Health and Welfare’s Collaboration Center of Health Information Application to use for databases that can be accessed by other parties for research or survey purposes.
The lawmakers said that the inadequacy of current regulations on the use of NHI data has jeopardized people’s medical privacy.
In defense of the data utilization, some government officials have cited Article 16 of the Personal Information Protection Act (個人資料保護法), which allows government agencies to use individuals’ personal information if it is within “the scope of its job function.” The article further stipulates that such data may be used if it serves the public interest or for academic research conducted by a government agency or academic institution, but adds that any personal information used cannot disclose the identity of the individual it pertains to.
However, Taiwan Association for Human Rights specialist Chiu I-ling (邱伊翎) said that the “public interest” is a vague term and the act does not authorize the release of personal information by the government to a third party.
“The act is a general law. It is the lowest threshold, not the legal basis regulating how the state should handle the public’s private health data. Neither the NHI Act (全民健康保險法) nor the Medical Care Act (醫療法) sanction third-party use,” Chiu added.
She said that a law should be written that provides a mechanism enabling people to opt out of sharing their medical records.
“There are no studies anywhere that do not allow participants to quit, which is essentially the situation Taiwanese are in now, with everyone forced to participate in research work,” Chiu said.
She also said government agencies’ measures to make health information anonymous before it is used for research are ineffective and faulted the government for failing to make clear how the public benefits such studies, for example through the discovery of new drugs or filing of patents.
Chiou Wen-tsong (邱文聰), an associate research professor at Academia Sinica Institutum Jurisprudentiae, likened using private information without consent to requisitioning data.