Activists say Academia Sinica project an 'invasion of privacy'

Rights group vows to gain global support to block program from collecting blood samples for study

Activists say Academia Sinica project an 'invasion of privacy'

Human rights activists have blasted a program recently launched by Academia Sinica's (中央研究院) Institute of Biomedicine to collect blood samples of a large number of native Taiwanese for research purposes.

The activists have accused the program of infringing on the privacy of local residents, and vowed to appeal to the Office of the United Nations Human Rights Commissioner and other international organizations for support in opposing the program.

Institute of Biomedicine Director Chen Yuan-tsung said yesterday that a task force under his leadership began last August to study the feasibility of setting up a "Taiwan Biobank." The goal was to determine the causes, transmittance methods, and treatment of some of the most common indigenous diseases, such as hepatitis B.

This program was jointly introduced by the National Science Council (國科會) and the Health Department in 2004 at the recommendation of the Executive Yuan's Science and Technology Advisory Group, and would not be carried out until 2007, even if the NSC approves it after the Lunar New Year holiday.

Chen said the project is necessary to learn more about diseases endemic to Taiwan because the local diet and lifestyle is different from those in other countries.

He added, however, that the government may call the program off if opinion polls find that most people are opposed to the idea.

Sources said, however, that the Department of Health will launch a test program to collect 15,000 blood samples in Chiayi, Hualien, and Miaoli counties later this year.

"Our goal is to collect 200,000 blood samples in Taiwan to facilitate systematic research of some indigenous diseases in order to understand their causes and ways of treating them," Chen said.

The proposed Taiwan Biobank is necessary for the establishment of a better public health system and for fighting those diseases that have troubled the people of Taiwan for a long time, he added.

Chen made the remarks in response to inquiries from the Taiwanese Association for Human Rights after some legislators representing aborigines questioned why several research organizations went to their villages to collect blood samples in the name of performing free health exams.

A spokesman for the Taiwaense Human Rights Association said the program would represent a serious violation of human rights and individual privacy if the government did not explain it to those from whom blood was collected and obtain their approval to use the samples for research.

Liu Ching-yi, an associate professor at the Graduate School of National Development Studies at National Taiwan University, said Academia Sinica conducted a small program in 2003 that collected blood samples from 3,000 people to set a smaller-scale Biobank.

Many people offered their blood samples in exchange for free health checkups, but did not know that the samples would be used for long-term research purposes. The research would trace their genes, residences, and medical histories and determine how these factors could influence their offspring for generations to come, Liu said.

Taiwan Association for Aboriginal Policy-making Chairman Yang Chih-wei said he had often heard that local public health officials convinced indigenous peoples to offer blood samples in exchange for small gifts, but did not explain what the samples would be used for.

NSC Development Department Director Chung Pang-chu said his agency is fully aware of the ethical, legal and social impacts of setting up the Taiwan Biobank.

"We have begun studying related issues in preparing a comprehensive assessment report and will not carry the program out before the government has fully discussed it with the people," he said.

Updated : 2021-03-06 08:17 GMT+08:00