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Corporate Pirates: Mining humanity



Subject:  Corporate Pirates: Mining humanity
Date: 16 Jan 1999 20:11:52 GMT

/** twn.features: 302.0 **/
** Topic: Mining humanity **
** Written  8:55 AM  Jan 14, 1999 by twnet@po.jaring.my in cdp:twn.features **

January 1999

MINING HUMANITY

Indigenous activists see little meaningful distinction between the
scientific undertakings of the Human Genome Diversity Project, the
commercial patenting and ownership of human genetic material, and the
aggressive efforts of transnational pharmaceutical companies to expropriate
indigenous knowledge as 'intellectual property' under the rules of the World
Trade Organisation. Each of these activities reflects an endemic disregard
for indigenous people's biological and cultural integrity, and a
continuation of the Western legacy of colonialism and conquest.

By Brian Tokar

 Recent opposition to biotechnology and genetic engineering has focused on
these technologies' implications for food and agriculture. This is entirely
necessary, as tens of millions of acres of US farmland are being planted
with genetically engineered crops that have serious consequences for our
health and for the integrity of living ecosystems. With multinational
chemical companies like Monsanto and Novartis buying up major commercial
seed companies at a staggering pace - Monsanto alone has purchased six of
the largest and most influential seed companies in the past two years - the
cause for alarm is beyond question.

 Medical research using the methods of genetic engineering raises a more
difficult dilemma for critics. Many people are hesitant to criticise, since
researchers promise to find a genetic basis for diseases like cancer and
AIDS, not to mention scores of rare but debilitating genetic disorders.

 Even Jeremy Rifkin of the Foundation for Economic Trends, perhaps the
world's best-known  critic of biotechnology, has recently  equivocated on
this  question. While describing in detail many of the serious ethical and
social consequences of biotechnology, Rifkin's latest book, The Biotech
Century, describes promised future medical advances with an enthusiasm, and
an air of historic inevitability, that only the industry's most loyal
boosters could match.

 One group of people, however, hasn't hesitated to criticise today's
genetics-centred medical research agenda: the representatives of the many
indigenous nations throughout the world which are increasingly the subjects
of genetic research. In a search for genetically distinct groups of people,
>From which genes linked to particular disease-related traits can be isolated
and identified, scientists have travelled to the ends of the earth. Since
the most isolated populations are usually the most genetically homogenous -
and since conditions of poverty and undernourishment increase the likelihood
that a genetic propensity to disease will be expressed within a person's
lifetime - researchers often focus their efforts on remote indigenous
populations.

 Scientists have trekked to Saudi Arabia in search of genes of glaucoma, to
Ghana and Nigeria to study diabetes, and to Mongolia for studies on
congenital deafness. Researchers from the University of Iowa regularly
travel to a remote Philippine island to collect blood and tissue samples
>From a population with an unusually high incidence of cleft lip and palate.
A group from the University of Toronto has been searching blood samples from
a remote island in the South Atlantic for a gene for asthma. These
expeditions were funded by a California-based company, Axys Pharmaceuticals,
which in turn sold its rights to the German pharmaceutical giant Boehringer
Ingelheim for $70 million.

 The pharmaceutical industry clearly expects profitable results from this
kind of research. Indigenous activists see it very differently, however.
'Fraud, deception and bribery are being used to take samples from indigenous
populations around the world,' explained Debra Harry, founder of the
Indigenous Peoples' Coalition on Biopiracy, at a recent scientific symposium
sponsored by the American Association for the Advancement of Science.

 Cases of bribery are well documented. Populations that agree to donate
blood and tissue samples are often promised significant improvements in
medical care. Researchers promise better community health services, provide
hard-to-get medicines, and introduce people to the latest Western
technologies, from cameras and tape recorders to thermos bottles and even
solar refrigerators.

 On the other hand, communities are rarely informed about the full range of
uses for their genetic information. They've never been party to the
multimillion-dollar agreements between research institutions and
pharmaceutical companies that have become routine in the world of
biotechnology.

 There are also serious cultural conflicts. Many traditional peoples
maintain long-standing strictures against meddling with another person's
body, blood, hair, saliva, clothes, or even excrement. Burial ceremonies are
designed to assure that the entire body of the deceased - and often their
most treasured belongings - are buried with them. Many cultures carefully
protect placentas against tampering until they are buried according to
traditional practices, and some Pacific island cultures even share a
tradition of not violating another's footprints. The taking of blood and
tissue samples for research is seen by many as a threat to the integrity of
the traditional lifeways that have sustained them for millennia.

 In the context of centuries of colonial and neo-colonial domination, it's
easy to understand why many indigenous activists see this kind of research
as yet another step on the road to extermination. '[T]he more information
the outside world has on our natural resources, the more they rob and
destroy them,' wrote Ruth Liloqula of the Solomon Islands in a 1996 special
isssue of Cultural Survival Quarterly devoted to this question.

 'The only thing we have left and can call our own is our genetic makeup.
When this becomes the property of another body through a government that
takes no part in our daily life and has no involvement at all in the
composition of our genetic makeup, we are no longer safe from being
exterminated or from being exploited to the point of non-existence.'

 Just a few years ago, the people of the Solomon Islands, along with the
indigenous Guaymi people of Panama and the Hagahai of Papua New Guinea, were
the subject of patent claims on their genetic material that were granted to
the US government's National Institutes of Health (NIH). Each of these
patents, justified by the laboratory identification of unique genetic
traits, were subsequently renounced by the NIH in the face of widespread
international outrage.

 'Over the last 200 years, non-Aboriginal people have taken our land,
language, culture, health - even our children. Now they want to take the
genetic material that makes us Aboriginal people as well,' writes John
Liddle, director of the Central Australian Aboriginal Congress.

 Since the early 1990s, 16 separate gatherings of indigenous activists
around the world have passed resolutions questioning the social, economic,
political and ethical implications of genetic research on indigenous
peoples. The International Indian Treaty Council, based in San Francisco,
has called for a moratorium on this research until indigenous people's
concerns are fully addressed and the United Nations adopts international
standards.

 Indigenous opposition was crystallised in 1994 by the establishment of a
Human Genome Diversity Project by agencies of the US government. The Project
was created at the urging of prominent scientists to correct the distinctly
Eurocentric bias of the multi-billion-dollar Human Genome Project (HGP).

 The HGP is a worldwide effort, supported by most of the world's leading
industrial nations, which seeks to discover a complete, sequential map of
the human species' 100,000-odd genes by the year 2005. Managed in the US by
the Department of Energy, the HGP has jump-started the emerging field of
human 'genomics', and led to an increasing focus on identifying human genes
that are of potential commercial interest.

 With the cooperation of HGP agencies around the world, biotechnology
companies have expedited the discovery, patenting and commercialisation of
human genetic traits, and are using this knowledge to consolidate their
growing influence over the rapidly concentrating pharmaceutical industry.
Last May, a former NIH researcher, Dr Craig Venter, teamed up with a leading
scientific instrument company, Perkin-Elmer, to establish a private,
for-profit company to accelerate the process of identifying - and
patenting - important human genes.

 While most genetic mapping protocols developed under the HGP are designed
to sequence a 'typical', that is, Euro-American, set of chromosomes, the
Genome Diversity Project claims to offer a more balanced view. Proponents
promise a scientific blow against racism by demonstrating, for example, that
genetic variations among individuals are far greater than between so-called
'racial' groups.

 Geneticist Kenneth Kidd suggests that such knowledge can reveal useful
information about the causes and consequences of human genetic variation,
the evolution of disease resistance, and biological adaptations to climate
and other natural conditions. Kidd's own research has demonstrated a vastly
greater genetic variation among various tribal peoples in Africa than exists
in any other part of the world. He views this as supporting the hypothesis
that human migration out of Africa was a single unique event in evolutionary
terms, one which occurred only within the last 100,000 years.

 The concerns of indigenous activists are little assuaged by such findings, 
however. Not only does such research challenge traditional origin myths, but
researchers have demonstrated little concern for the real-world survival of
the groups they have studied. Indigenous peoples are described as 'isolates
of historic interest', and scientists focus on the need to collect and
immortalise tissue samples before various populations disappear from the
face of the earth.

 Indigenous activists see little meaningful distinction between the
scientific undertakings  of  the  Human  Genome  Diversity  Project,  the
commercial patenting and
...5/
-5-

ownership of human genetic material, and the aggressive efforts of
transnational pharmaceutical companies to expropriate indigenous knowledge
as 'intellectual property' under the rules of the World Trade Organisation.

 Each of these activities reflects an endemic disregard for indigenous
people's biological and cultural integrity, and a continuation of the
Western legacy of colonialism and conquest. Medical research, the
identification and patenting of genes, and bioprospecting for commercially
useful plants and other products from native lands are often undertaken by
the same people, and sponsored by the same thoroughly unaccountable
 institutions.

 To allay the vocal concerns of research subjects, the Human Genome
Diversity Project and the NIH have collaborated on efforts to develop a
'Model Ethical Protocol' for genetic research. This document, presented to
the scientific community at a meeting in Philadelphia earlier in 1998, urges
researchers to respect cultural diversity and address human rights issues,
advocating sensitivity to group identity, divergent worldviews, and
awareness of the ravages of colonialism. But precise definitions are often
difficult, and the problem of group rights is rife with ambiguities.

 Are researchers to recognise the sovereignty of particular villages? Of
official tribal governments? The conflicts between traditionalists and
assimilationists in many indigenous communities are persistent, and often
intractable. What does it really mean for people to share in the benefits of
research? Should research subjects be able to restrict commercial uses, or
alter research priorities to better match their community's needs? When does
providing medical services to sampled populations cross the ethical line and
become a form of bribery? Questions such as these are inherently open-ended
and sometimes unanswerable in principle.

 Commercial research on human DNA is proceeding at an accelerating pace. The
Human Genome Diversity Project is serving as a forum for ethical and
detached scholarly debates, while providing a symbolic lightning rod for
critics of genetic research. The project's primary goal of providing a
worldwide repository of blood samples and human cell lines in the public
domain has yet to receive any substantial funding.

 Even if these profound ethical issues are someday resolved, the Model
Ethical Protocol doesn't even begin to address the profound genetic bias
that has diverted the course of medical research in recent years. Spurred by
advances in biotechnology, modern medicine has radically shifted its focus
>From external causes, such as viruses, bacteria, and environmental toxins,
toward identifying internal, inherited susceptibilities to disease.

 We are conditioned by the media, and increasingly by medical practice, to
accept that the identification of a particular gene, even if it is shared by
only a small portion of those who contract a particular disease, means that
the gene 'for' that disease has been discovered. For example, the widely
publicised 'breast cancer genes' account for less than 10% of all cases of
breast cancer; nearly 95% of breast cancers aren't familial, and those who
carry one of the dreaded genes have about a 50% chance of contracting the
disease.

 Yet, both research priorities and media attention have shifted dramatically
>From the well-known environmental causes of cancer, toward an ever-narrower
focus on so-called 'cancer genes'. This blaming-the-victims approach has
largely superseded research on the underlying environmental causes of many
chronic diseases. Research on environmental illness is being reduced to
identifying and screening for genetic 'markers' that identify those who may
be most susceptible; a new government-sponsored Environmental Genome Project
allocates $60 million for this purpose.

 Even where the genetic basis of a disease is well understood by scientists,
it rarely brings us any closer to a 'cure'. But the easier identification of
disease susceptibilities, in adults or prenatally, has opened the door to
new kinds of discrimination.

 For example, one in 10 African-American babies in the US is born with at
least one copy of the sickle cell gene, while only one in 500 actually has
sickle cell anaemia. Although the exact molecular basis of sickle cell
anaemia has been known for 30 years, scientists still don't understand why
some people afflicted with the condition become seriously ill as young
children, while others are affected much later and to a far less serious
degree. Yet, discrimination by insurers, and in the workplace, against those
who test positive for the sickle cell gene has been widespread since genetic
tests for this condition first became available in the late 1970s.

 'What if the earlier generation of public health workers had spent their
research money on figuring out which arm of which chromosome holds the "gene
for" susceptibility to cholera?' sociologist Barbara Katz Rothman asks in
her new book, Genetic Maps and Human Imaginations. Would this knowledge have
superseded efforts to provide everyone with safe drinking water? This is a
very apt metaphor for the outlook of today's medical biotechnology.

 While the methods of genetic screening, DNA-based drug identification, and
even gene therapy might offer tangible benefits for some people, the narrow
genetic bias of such research ultimately diverts attention from the
underlying, preventable causes of common human afflictions. To address these
causes requires not only a different research agenda, but a real commitment
to addressing the underlying social and economic roots of poverty, social
decay, and environmental destruction. - Third World Network Features

-ends-

About the writer: Brian Tokar, author of Earth for Sale and The Green
Alternative, is currently editing a comprehensive anthology on the
implications of biotechnology. A longer, footnoted version of this article
was published last summer as an Occasional Paper of the Edmonds Institute
(20319 92nd Ave. W., Edmonds, WA 98020).

The above article first appeared in Toward Freedom (Winter 1998/99).

When reproducing this feature, please credit Third World Network Features
and (if applicable) the cooperating magazine or agency involved in the
article, and give the byline. Please send us cuttings.

Third World Network is also accessible on the World Wide Web. Please visit
our web site at http://www.twnside.org.sg

1843/99

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Reply-To: Margaret_Weston@capmac.org (Margaret Weston)
Date: Sat, 16 Jan 1999 22:21:43 -0600
Subject: Corporate Pirates: Mining humanity



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