Wed, Jan 11, 2006 - Page 8 News List

Explain database plan to the public

By Liu Ching-yi 劉靜怡

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.

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