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This article comes from the Taipei Times at:
http://www.taipeitimes.com/news/2000/08/29/print/0000050974

Title: 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

DNA research has been a hot
issue worldwide in recent years,
and one which culminated in the
decoding of the DNA sequence
of the entire human genome,
accomplished by scientists from
six countries in June.

In keeping with the global trend, Academia
Sinica members last month urged the
government to establish a Taiwanese gene
database of
Taiwan's ethnic groups for the
purposes of medical research and further
study of the diversity of human populations
and languages.

But some researchers have expressed
reservations about the plan, saying the
database should be used only for disease
research, not for ethnic studies, lest these
give rise to political disputes.

         In addition, some say the
         classification of ethnic groups in
        
Taiwan is based on a biased theory
         in the first place, and distorts the
         proportions of the population that
         different ethnic groups in
Taiwan
represent.

More importantly, the ethics of genetic
research is of primary concern. It has been
discussed in many other countries within the
past decade and recently became
controversial in
Taiwan, particularly among
Aborigines, who some say have been subject
to gene sampling more than other ethnic
groups in
Taiwan.

Reflections on 'Gene Hunter'

Watan (娃丹), a reporter of Taiwan-ese
Aboriginal origin, participated in a UN forum
on issues affecting indigenous people in 1995
and was surprised to hear a familiar story
when he watched a documentary film called
Gene Hunter there.

The documentary tells of a group of American
and British geneticists who visited tribes of
American Indians to take blood samples.
They told the native peoples that the
research they were conducting was for
health reasons and did not reveal their actual
research motives.

"I was immediately shocked," Watan said,
"but it's the same in
Taiwan."

"Taiwanese Aborigines have been facing the
same situation for decades, but no one
pointed out the ethical problems before," he
said.

Chen Shu-cho (陳叔倬), currently a lecturer at
Tzu Chi College of Medicine and Humanities
and former assistant on various genome
projects, is also aware of the potential
violation of Aborigines' human rights posed
by genome research.

"No researcher told the people whose blood
was taken why and how their blood would in
fact be used," Chen said. "Different
researchers told them the same thing: that
their blood was to be used for a health
check," he said.

"But why should a mere health check require
so much blood?" Watan and Chen asked as
they recounted how, although 3ml of blood
was sufficient for a health check, many
researchers drew between 10ml and 20ml
and divided the blood into different tubes.

Three years ago, the former provincial health
bureau implemented an overall health
checkup for gout and liver diseases in
Aboriginal areas. The researchers drew 10ml
of blood from each person and divided it into
three tubes.

"One tube for a gout check, one for liver
diseases, and the third tube for what?" asked
Watan.

"Some research centers and medical
institutions have drawn many thousands of
tubes totalling tens of thousands of milliliters
of blood from Taiwanese Aborigines,"
Aboriginal lawmaker Tsai Chung-han (蔡中涵)
said.

"Aborigines on Orchid Island had the worst
experience," said Aboriginal physician Kao
Cheng-chi (高正治), a former National
Assembly member who worked as the
director of a health center on
Orchid Island.

Why do research centers and medical
institutions focus on Aboriginal blood?

The Hypothesis for Aborigines

According to geneticists worldwide, there
are two reasons to target Aboriginal blood.
One is that researchers believe that
Aborig-ines have purer heredity than the
most people in mainstream societies
worldwide, which, they believe, will enable
them to obtain archetypal blood samples; the
other is that researchers believe that
Aborigines adopted distinct means of
adapting to their environments and
developed specific genes for fighting
diseases.

Both reasons revolve around the isolation
and long histories of Aboriginal societies.

In Taiwan, the government has officially
identified nine ethnic groups of Aborigines.
Some independent researchers claim there
are at least twelve.

The languages, cultures and physical
characteristics of members of Aboriginal
groups vary. Due to these differences --
including their lower social status -- from Han
Chinese (the main ethnic group in
Taiwan),
researchers consider them to be a distinct
group.

Because they are considered to be distinct,
Aborigines are often targeted for research
into phenomena such as liver disease and
gout.

Determining whether Taiwan is the origin of
Austronesian peoples, including Australian
Aborigines, is another question driving
researchers to target Aborigines and one to
which an answer has, as yet, remained
elusive.

Researchers have tried different ways to
trace the origin of Austronesian peoples.
Eight years ago, HLA (Human Leukocyte
Antigen) research became popular as a
means of investigating the ethnic, genetic
and cultural proximity between human
populations.

HLA is one factor that can give researchers a
way to measure such proximity. Taiwanese
researchers found that the HLA of Aborigines
showed a very high degree of species purity,
in common with that of Austronesian
peoples.

Academia Sinica, at the time this type of
research became popular, launched a project
on kinship and cultural relationships between
Taiwanese Aborigines and South-east Asian
indigenous peoples. Researchers visited the
tribes, with the assistance of local health
centers, on the pretext of health checks, Kao
said, who was officially responsible for
organizing the collecting of blood on
Orchid
Island
at the time.

Orchid Islanders are widely thought to have
the closest kinship with some Austronesian
populations and were considered important
to the research.

Last year, Aborigines again became the
target of a research project. Researchers in
Pintung Christian Hospital and Kaohsiung
Medical College
sought their blood for AIDS
research. Acting on the hypothesis that
Aborigines had some genome variation that
counteracted HIV, since no death from AIDS
among Aborigines had ever been recorded,
the researchers planned to collect blood from
40,000 Aborigines.

Some Aborigines cast doubts on this plan.
They said, according to an Aboriginal
physician who declined to be named, that:
"One reason for the low mortality from AIDS
among Aborigines was their low population in
Taiwan. Besides, many people have died of
other related diseases rather than AIDS
itself."

The first person known to have contracted
HIV in
Taiwan, Han Sen (韓森), is of
Aboriginal origin. He offered cultural and
therapeutic interpretations instead of
genetic reasons for the low mortality rate
from AIDS among Aborigines.

"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.

"Taiwan should legislate to the effect that
genome researchers may not apply for
patents for their research results," said
lawmaker Tsai.

Chen also pointed out that the Philippines,
Bolivia, Columbia, Peru, and Venezuela --
where Aborigines constitute the majority of
citizens -- have adopted laws monitoring the
acquisition of genetic resources.

But there is no related legislation in Taiwan.
The only related law is the Medical
Treatment Law (醫療法) which is overseen
by the Department of Health (DOH). The law
stipulates that any medical research upon
the human body should be approved by the
DOH before implementation.

"This law, however, fails to regulate
researchers mainly because of its limited
definition," said Lin Chin-fen (林慶豐), a DOH
official responsible for Aboriginal issues.

"Researchers argued that genome research
was not research upon the human body," Lin
said, adding, "Few researchers informed the
DOH before they conducted health checks
and drew blood from Aborigines."

The DOH's position within the government's
hierarchy is another hindrance to the
monitoring of this kind of genome research,
Lin added.

Academia Sinica, the National Science
Council and National Health Research
Institute are the main institutions involved in
genome research. "But the DOH's seniority
within government is no higher than that of
these organizations, which presents
difficulties for it in its monitoring role."

"The DOH has suggested that the
government organize a Cabinet-level ad hoc
committee and incorporate an ethical
protocol into legislation relating to
research," Lin said. "The existing Medical
Treatment Law should be expanded to cover
genetic research and other research related
to people."

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