An Academia Sinica-led medical research project that involves the transfer of patients’ genetic information held by the Ministry of Health and Welfare could contravene their legal rights, a lawmaker said yesterday.
The Taiwan Precision Medicine Initiative led by the Institute of Biomedical Sciences at Academia Sinica gives the institute access to the genetic information of more than 600,000 people, independent Legislator Huang Kuo-shu (黃國書) said.
The initiative, launched in 2020, involves precision analysis of patients’ genome data with the aim of matching them with the most effective medical treatments and drugs, while using minimal medical resources.
Photo: Liao Chen-hui, Taipei Times
“In light of advances in medical research, genetic data has huge commercial value, but access to it also comes with significant national security implications,” Huang said.
Any collection of human samples, derivatives or related data for medical research purposes must be done with the consent of the individual it is collected from, in accordance with the Human Biobank Management Act (人體生物資料庫管理條例), he said.
To protect people’s rights, the institute should ensure that individuals have consented to their data being used, and that they have the right to withdraw their data at any time, he said.
It should also ensure that patients’ genetic and clinical data are being stored in accordance with regulations governing digital storage of personal information, and that no unauthorized backups of that data have been made, he said.
Authorities should investigate whether the project makes use of any foreign funding, and whether there is any risk of data being leaked to foreign entities, he added.
Although genetic data are important for the competitiveness of Taiwan’s medical industry, personal information must be protected to prevent risks to national security and individual rights, Taiwan Jury Association director Chen Wei-shyang (陳為祥) said.
Academia Sinica yesterday said it had obtained consent from all individuals whose data are used in the project, in accordance with the Human Subjects Research Act (人體研究法).
“Participant information is deidentified, and the key code that links the data to the individual is held by the partner hospital, not by us,” it said. “Researchers at the institute cannot link data to the participants, nor can they see any personal information.”
Management of data storage is done by institute director Kwok Pui-yan (郭沛恩), and is in accordance with the law, it said.
Responding to concerns that participants could download the results of research using their data, Academia Sinica said the results are made available by the partner hospitals, and that participants are informed the results are for reference only and not to be used for clinical diagnosis.
“The research follows the guidelines and ethical norms of international medical organizations,” it said. “The project is purely for academic research. There is no commercial cooperation, and there is no risk of data leakage to foreign countries.”
Additional reporting by Yang Yuan-ting
STRONG RELATIONSHIPS: China would not blockade Taiwan, because President Xi respects him, and Russia would not have invaded if he were president, he said Former US president and the Republican candidate in next month’s presidential election Donald Trump said he would impose additional tariffs on China if China were to “go into Taiwan,” the Wall Street Journal (WSJ) reported. “I would say: If you go into Taiwan, I’m sorry to do this, I’m going to tax you, at 150 percent to 200 percent,” Trump was quoted as saying in an interview with the WSJ published on Friday. Asked if he would use military force against a blockade on Taiwan by China, Trump said it would not come to that because Chinese President Xi Jinping (習近平) respected
The Taipei Department of Transportation discouraged YouBike 2.0E users from taking them on long-distance trips after a Taipei city councilor said that riders often use the new electric bike, YouBike 2.0E, to climb Yangmingshan (陽明山). Taipei earlier this year began offering the first 30 minutes of YouBike 2.0 rentals for free, with Taipei and New Taipei offering the YouBike 2.0E on Aug. 30 to encourage rider usage. For YouBike 2.0, the rate is NT$10 per 30 minutes within the first four hours, NT$20 per 30 minutes for five to eight hours and NT$40 per 30 minutes after eight hours. Meanwhile, for e-bikes,
RESOURCE RICH: Taiwan is located in the Pacific Ring of Fire and has up to 30 gigawatts of the potential energy, of which 10 gigawatts could be economically viable Academia Sinica and CPC Corp yesterday began drilling the nation’s first deep geothermal well in Yilan County’s Yuanshan Township (員山). The 4km-deep well is expected to take 18 months to complete and has an estimated investment of NT$337 million (US$10.54 million), Academia Sinica President James Liao (廖俊智) said. “While Taiwan has up to 30 gigawatts of potential deep geothermal energy, with an estimated 10 gigawatts being economically viable, only by digging wells can we determine the actual amount of commercially viable geothermal energy,” Liao said at the project’s opening ceremony. Data collected during and after the excavation process would be used for future
HACKERS’ MARKET: Chat logs about Taiwan and documents outlining ways to take over online accounts were leaked from a company that sells data from hacks Taiwanese cybersecurity specialists found 577 leaked documents which show that the Chinese Communist Party is engaging in “cognitive warfare” against Taiwan through cyberattacks and disinformation campaigns, a documentary released last month by Japanese public broadcaster NHK showed. The filmmakers behind Tracking China’s Leaked Documents said they spent six months visiting seven countries, including Taiwan, where they interviewed members of TeamT5, a malware research and cybersecurity firm, which found the leaked documents. TeamT5 said they discovered a string of mysterious URLs on the social media platform X, which they suspected could be accounts created by hackers or people who leaked data, which led