In the last few years, there has been opposition to the implementation of a national IC card system, and to the idea of putting an individual's fingerprint on their ID cards.
The reasons for putting a microchip in the national health insurance card have not been explained. And the government has not yet come up with an appropriate plan for the use of a database containing household registrations, fingerprints and national health insurance information. Nevertheless, researchers at Academia Sinica and other institutions are working behind closed doors to set up a Taiwan Biobank with funding from the Department of Health, the National Science Council and the Cabinet. They are operating in a legal gray area, neglecting human rights issues and research ethics.
A pilot study for this database has already collected 3,000 blood plasma samples from groups in eastern Taiwan by relying on a document called a "Medical Research Agreement." The document is full of hidden traps and written in unclear language.
There are plans to expand the scope of these activities after the Lunar New Year by beginning to collect information from specific areas, with a focus on Minnan groups. Blood plasma samples and genetic information are to be taken from 200,000 people between the ages of 40 and 60. The results will be subject to comparative analysis. It is difficult to estimate how much money will be required, as this will be determined by the scope of relevant research.
First of all, the need for the program should be subject to more discussion. Second, apart from its significance in the development of infrastructure for the nation's biotech industry, the Taiwan Biobank is a major national project that involves the Taiwanese people's health, privacy and property rights. But most of the potential members and beneficiaries of the database will have no way of knowing its contents.
Controlling DNA sequences implies having control of an individual's or a group's most private information. Academia Sinica says that it used random sampling to find the 3,000 people from whom they took blood samples. But it should clarify its exact methods for collecting data. What mechanism has been used to ensure that no family or ethnic group will be defamed and hurt?
We must also ask whether the "Medical Research Agreement" ensures that participants will be informed about the purpose and use of the blood sample taken. Also, has there been a promise to share any benefits that may result from future research and development?
It should also be asked whether the results of successful research into groups with a particular disease will actually benefit that group. Another question is whether there is a mechanism for collective information and agreement by the group to which an individual belongs, and by the residents living in the area, and to what extent an explanation has been given to these people.
These questions are not intended to prevent researchers from focusing on clans or collectives, nor is it intended to block research institutions from cooperating with foreign firms. Rather, they are intended to stop Taiwan from once again becoming the laughingstock of the international community due to technological research being in bed with business interests, or by creating a local version of the now-disgraced South Korean scientist Huang Woo-suk.
Precisely because this project involves a great investment of national resources, it is not a strictly scientific issue. Most of all, those involved should not be allowed to sidestep issues of democratic participation and monitoring. Such fundamental participation and monitoring cannot be replaced by holding public hearings, or by a few public symposiums arranged together with a media outlet which will selectively disclose project contents and implementation.
As part of the "Taiwan-BioMedtech Island" project, put-ting a microchip in the national health insurance card, the digitization of patient histories, and the establishment of Taiwan Biobank have been designated as nationally important projects, without the possibility of public review and monitoring. The media has shown some interest in the publication of patient histories, and even publicized private information during the most recent political election campaign. But there have been no reports at all discussing the extent to which the beautiful Taiwan Biobank slogan hides ideas that have never been publicly discussed -- but which have already been silently used to begin work on the database.
The elite in the scientific, philosophical and legal fields that are directing this major national project have a duty to explain where the information in the Taiwan Biobank comes from. The sponsors as well as government institutions in charge of household registration and health insurance should review whether this kind of research violates the Law for the Protection of Computer-managed Personal Information (電腦處理個人資料保護法) or the Medical Treatment Law (醫療法). They should also abide by the recently passed Access to Government Information Law (政府資訊公開法) and make public the decision-making process behind this national program.
With this kind of technological program, the issue of public trust cannot be avoided. This trust should not be lightly traded for any manner of scientific halo. Instead, the public should be thoroughly consulted and informed, while the question of whether or not a Taiwan Biobank is absolutely necessary -- and the truth about every mechanism involved -- should be clearly explained.
Liu Ching-yi is an associate professor of law in the Graduate Institute of National Development at National Taiwan University.
Translated by Perry Svensson
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