CHECK YOUR ETHICS AT THE DOOR:
EXCLUSION OF INDIGENOUS PEOPLES' REPRESENTATIVES FROM DNA SAMPLING
CONFERENCE CASTS DOUBTS ON GENE HUNTERS' SINCERITY
Craig Benjamin, Cultural Survival Canada
There were no representatives of indigenous peoples' or public interest
organizations invited to speak at the First International Conference on
DNA Sampling. And when the conference opened at a Montreal hotel on
September 6, security guards -- acting, they said, on the instructions of
the conference organizations -- blocked indigenous peoples' representatives
from entering the meeting room.
Conference organizers, however, were unable to silence opposition to mass
sampling and commercialization of human genes. After being evicted from
the hotel premises, representatives from the Assembly of First Nations,
Cultural Survival Canada, the Asian Indigenous Peoples' Pact, the Asian
Indigenous Women's Network, the Rural Advancement Foundation International,
and numerous other international indigenous peoples' and pubic interest
organizations set up a protest outside the hotel entrance where they
challenged conference participants to "check their ethics at the door."
According to some conference participants, this protest and the overt
exclusion of indigenous peoples by the conference organizers, raised
serious questions not only about the responsibilities of researchers
toward the peoples targetted by genetic research, but also about the
capacity and sincerity of the professional ethicists who at the moment
are the primary watchdogs overseeing the rapidly expanding trade in human
genes.
NO HUMAN "SELL" LINES
While the professional ethicists continue to fumble with basic issues
such as who has the right to speak at conferences, the collection, and
exchange and commercialization of human DNA is both well-established and
rapidly accelerating.
The US National Institutes of Health is known to have one of the world's
largest collections of human DNA. This collection includes 1,773 samples
from indigenous people from Colombia alone. Other national research
institutions, universities, hospitals and even the US military are known
to have extensive collections of genetic materials from indigenous
peoples. The collection and exchange of indigenous peoples genetic
materials among public agencies has already led to the granting of one
patent -- a patent over the cell lines of a Hagahai man from Papua New
Guinea granted to the NIH -- and to other patent claims.
The speculative market in genetic patents is a key factor driving the
rapid acceleration in the collection and trade of human genes. But
because of the porous -- and poorly guarded -- boundaries between
academic institutions and private corporations, research projects
claiming to have no commerical interests can also contribute to the
commodification of the human gene by bringing genetic materials into
unregulation circulation. A program for mass sampling of indigenous
peoples and other isolated populations, the Human Genome Diversity
Project (HGDP), has been strongly criticized by indigenous peoples
internationally for this reason, among others.
GENE ETHICS OR GENETICIDE?
An open letter to the Montreal conference on DNA sampling was endorsed by
16 organizations and more than 30 individuals. The letter stated, "The
collection, exchange, and commercialization of human genes is not a
possibility or a proposal, but a reality. In the process of more than a
decade of collection, exchange, and commercialization of the human gene,
the rights and safety of the peoples targeted by this research have
already been jeopardized in numerous incidents."
Concerns raised in the open letter included: the conflict between DNA
sampling and the spiritual beliefs and worldviews of many of the targeted
peoples; the fact that genetic materials of indigenous peoples have
already been collected, exchanged and commercialized without the express
consent of the sampled peoples; the fear of many indigenous peoples that
DNA research will become only the latest tool of biological warfare
against indigenous peoples; the fact that the US military is already
engaged in collections targetting indigenous peoples; and the fact that
genetic materials have already been exchanged between medical researchers
and military biological warfare labs in the US.
The letter also pointed out the danger that genetic studies of human
diversity such as the Human Genome Diversity Project (HGDP) will lead to
the cultural, political, and social complexity of indigenous identity and
aboriginal rights being reduced to an arbitrary genetic test.
The endorsing individuals and organizations called for an immediate
moratorium on the collection and exchange of human DNA until these
concerns are fully addressed. The letter also called for a full review of
all existing collections of genetics materials, and where the consent of
the sampled peoples cannot be proven, repatriation of the collection to
the originating peoples or communities, or destruction of the collection.
The letter stated, "Hollow debates orchestrated by the proponents of
accelerated DNA sampling can no longer be allowed to cloak this
exploitative and unscupulous enterprise in the guise of disinterested
science...Since the genomic industry and its supporters have been unable
to assure the rights and safety of the peoples targeted by DNA sampling,
... we call upon all scientists, ethicists and policy makers of good
conscience attending the First International Conference on DNA Sampling'
to endorse these basic measures for ensuring that human rights and safety
will no longer be casualties of the rush to privatize the human gene."
STAGE ONE: DENIAL
The Montreal conference was sponsored by the Canadian Genome Analysis and
Technology Programme (CGAT), a program of the Canadian government that
funds research into the ethical implications of human DNA research while
simultaneously devoting the bulk of its funding to expanding this research.
Consistant with the mandate of CGAT, the Montreal conference, while
promoted as an open discussion of the "ethical, legal and policy aspects"
of human genetic research, the selection of speakers and topics was
oriented less toward fundamental issues of whether the collection of and
experimentation on human genes is morally, socially or politically
acceptable than toward setting guidelines for expanded collection and
commercialization. Topics included "DNA sampling and banking, models of
consent and confidentiality, patenting and commercialization, legal
status of human genetic material and information, and genetic
epidemiology and diversity."
Although indigenous peoples' representatives were not allowed an
opportunity to speak at the conference, the roster of invited speakers
did include researchers actively involved in the collection and study of
indigenous peoples' genes, including two representatives of the Human
Genome Diversity Project.
In fact, the timing of the Montreal conference little more than a week
before a major US funding agency was scheduled to discuss a proposal from
the HGDP led to speculation that the real agenda of the Montreal
conference was to help shore up the HGDP's image after more than four
years of denunciation by indigenous peoples.
Conference chair Bartha Knoppers, a professional ethicist, a consultant
to the UNESCO Bioethics Committee, and a member of the Human Genome
Organization (HUGO) Ethical, Legal and Social Issues Committee, denied
that the Montreal conference had any purpose other than open discussion
of "all the issues" surrounding DNA sampling. She admitted that the
absense of indigenous peoples' representatives on the list of invited
speakers was not an oversight, but a deliberate decision of the
organizing committee. However, she defended the decision to exclude
indigenous peoples' representatives stating that the issues surrounding
human DNA research are no more relevant to "any one population [sic] than
another" and that it was not feasible to invite representatives of all
the potentially interested groups and populations.
Confronted with the open letter listing specific concerns of indigenous
peoples that have largely been ignored in the debates around human DNA
research, Knoppers replied, "I have no knowledge of these issues. Native
studies is not my discipline."
By coincidence, the "First International Conference on DNA Sampling"
opened on the same day a meeting of the scientific and technical advisory
committee to the United Nations Convention on Biological Diversity wound
down. Indigenous peoples' representatives from around the world invited
to Montreal to present their testimony to the UN advisory committee, as
well as official government representatives, swelled the ranks of the
protest outside the doors of the DNA sampling conference.
Neither the first, nor the largest protest against DNA sampling, the
protest in Montreal was however the first to include such a broad
representation of targeted peoples from Southeast Asia, the Indian
sub-continent, Africa and North, Meso and South America.
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