Democratic Progressive Party (DPP) Legislator Huang Sue-ying (黃淑英) urged the Department of Health (DOH) yesterday to ban international pharmaceutical companies from exporting genetic data gathered in Taiwan.
Huang told a press conference that several doctors had said there has been a substantial increase in the number of hospital-based projects proposed by international pharmaceutical companies to collect human genetic data here.
The information was usually exported to the companies’ home countries to establish the firms’ biological databases for new drug innovation or medical research, she said.
“Almost all the international pharmaceutical companies have been doing this. The phenomenon is particularly common among hospitals that do human experiments,” Huang said, without naming companies or hospitals.
Huang said the practice had become prevalent because the legislature had yet to pass any legislation regulating the collection of genetic information. The health department should bar the export of genetic information already collected until legislators can pass protective legislation.
“[We] have not even resolved the human rights controversy surrounding the nation’s Taiwan Biobank project,” Huang said, warning that the collection of samples could violate test subjects’ privacy.
The health department’s Taiwan Biobank project aims to collect blood samples from 200,000 people to be used in research into the connection between human genes and diseases such as diabetes and cardiovascular ailments.
But DPP legislators and human rights activists have expressed concerns that the data could be put to inappropriate use without written regulations and violate participants’ human rights.
Chiou Wen-tsong (邱文聰), a member of Academia Sinica’s Human Subject Research Ethics Committee, said the existing Notice of Collection and Application of Human Body Samples for Research Purposes (研究用人體檢體採集與使用注意事項) was just an administrative order and therefore did not carry the weight of a law.
He urged the health department to submit relevant legislation as soon as possible.
DOH technical specialist Lee Shu-fang (李淑芳) said the department had submitted a draft act on the management of human biological data banks to the Executive Yuan for review.
Bureau of Medical Affairs Deputy Chief Liu Li-ling (劉麗玲) urged the public to make sure they know how their genetic information would be used when giving blood or tissue samples.