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Tue, Aug 29, 2000 - Page 2 News List

Genes, ethics and Aborigines

As Taiwan begins collecting samples to create a DNA database, scientists are facing criticism over the methods they have used to obtain blood from Aborigines - blood that is now highly valued for research projects

By Liu Shao-hua  /  STAFF REPORTER

"There is greater solidarity among Aboriginal families than among many native Taiwanese families," Han Sen said. "We enjoy more support from the family."

"Moreover, the survival of AIDS patients hinges more on whether they can follow strict therapeutic regimes rather than anything else," stressed Han Sen, who has been working as a social worker in a center for AIDS patients since he contracted HIV.

The Lack of Informed Consent

Many whose blood is now being used for research never gave formal consent for its use, however, because of the way it was collected.

Since 1990, Mackay Memorial Hospital has used Aboriginal blood for genetic research. It has targeted 11 ethnic groups of Aborigines, 1377 individuals, and used red blood cells of 37 kinds of blood types.

In 1998, the Pintung County Government, on instructions from the former provincial health bureau and in cooperation with Pintung Christian Hospital, drew 10ml of blood from 1,900 Aborigines for health checks.

This year, the Taipei City Government's bureau of health will provide a one-day free health check for Aboriginal residents of Taipei over the age of 40. The health department plans to target around 1,900 Aborigines and accomplish the checkup in five municipal hospitals by September.

The purpose of this health check is to look into why Aborigines have an average lifespan that is 10 years shorter than that of Taiwanese of Han descent, according to officials in the health bureau.

All of the blood extracted for research purposes so far has been conducted along with free health checks, and mostly under the arrangement of official health centers.

Everyone concerned with genetic issues agrees that genetic research is helpful and beneficial to the well-being of people all over the world, especially from the point of view of improving overall health.

"But the problem is that researchers have only concentrated on the results and have overlooked the process," Chen said, adding that, "the research results also became the intellectual property of the researchers, with the Aborigines gaining nothing in return for their contributions."

The ethical principle of informed consent was ignored in all the above activities, Chen said.

Genome researchers in Taiwan are also criticized for misjudging how taking blood and carrying out genome research would be perceived by Aborigines, some of whose cultures may have taboos about the use of blood and body tissues.

More Ethical Concerns

In 1991, a group of international human geneticists and molecular biologists proposed a Human Genome Diversity Project (HGDP) to undertake a worldwide survey of the human genome.

HGDP planning workshops proposed guidelines on ethical issues, which included informed consent and benefits to contributing peoples.

"Should a patent be granted on any specific product, the project must work to ensure that the sampled populations benefit from the financial return from sales," said one of the guidelines.

Aboriginal communities worldwide, however, still voiced suspicion about the project. UNESCO decided not to start the project until it had acquired the trust of Aborigines worldwide.

Patents are another consideration affecting genome research among Aborigines. "If commercial goals are involved, genome research will be more complicated," Watan said.

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