RAFI News Release - Phase II for Human Genome Research
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- Date: Fri, 21 Jan 2000 22:08:08 +0000
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Rural Advancement Foundation International
<http://www.rafi.org/>www.rafi.org | email@example.com
News Release 21 January 2000
Phase II for Human Genome Research:
Human Genetic Diversity Enters the Commercial Mainstream
A new report from RAFI reveals that the massive financial stakes involved in
the frantic race to find and commercialize human genetic variation is taking
place in the absence of public debate and government action. "The Human Rights
abuse of research subjects has worsened and governments and intergovernmental
institutions have fallen all over themselves trying to sidestep responsibility
for this complex ethical and medical conundrum," notes the report.
"In 1993, we first warned that the collection and management of human
research was taking place in an almost total policy and regulatory vacuum,"
says RAFI Executive Director, Pat Mooney. "That the vacuum still exists is
cause for outrage."
With computer-assisted DNA sequencing machines running faster and more cheaply
than its originators ever imagined, researchers are now turning from the crude
"generic" map of the Human Genome Project (HGP) to its inevitable Phase II
the drive to plunder, patent, and privatize the commercially-important bits of
variation found in individuals, indigenous peoples, disease and disability
groups, and ethnically-distinct communities.
"What has changed since RAFI first reported on the subject, is the
intensification of research on human genetic diversity and its
commercialization," notes RAFI's Director of Research, Hope Shand. "The
genomics companies are working hand-in-hand with the Gene Giants, and the rush
is on to claim exclusive monopoly patents on even the tiniest bits and pieces
of the human genome."
The real money in human diversity mapping lies in identifying and patenting
single nucleotide polymorphisms (SNPs or "snips") that code for specific
including diseases. The Gene Giants are hoping to patent SNPs in order to
develop diagnostic kits, monitoring instruments, and even "designer" drugs
tagged to the specific DNA of wealthy customers. "Hundreds of millions of
dollars are being spent in the effort to find and control SNPs but the
long-term profits will be in the billions and could ultimately restructure the
entire health care industry," warns the report.
Were the commercial value of human genetic diversity research ever in doubt,
those misgivings were unambiguously laid to rest when Iceland sold its genetic
heritage to the genomics company deCODE, who, in turn, hawked the human
Hoffman LaRoche of Switzerland for US $200 million. The spectacular and
controversial deal turned genomics research overnight from an obscure biotech
niche industry into a mainstream commercial venture. Suddenly, almost unheard
of genomics companies like Millennium (US), Genset (France), and Axys (US),
patenting diversity studies into a multi-billion-dollar commercial product
strategy aided and abetted by researchers at universities and even some
governments. The extension of patentability by the US Patent and Trademark
Office to single nucleotide polymorphisms (SNPs- the smallest unit of genetic
variability) has further galvanized commercial pharmaceutical enthusiasm for
the new industry. SNPs are the genetic basis upon which diversity re!
searchers define their investigations and distinguish individuals and human
populations from one another.
Given this full-scale commercial foray into diversity research in combination
with the new methods of sampling and sequencing, the pressing question for
ethnically unique populations and particularly for indigenous peoples is no
longer "Will we be sampled?" but rather "Who will have access to human genetic
diversity, and will it be subject to exclusive monopoly control?" notes RAFI
Researcher Julie Delahanty. "The financial stakes are so high in this
that some of the actors involved are ignoring some of the basic ethical
standards which should prevail in the collection of human material."
This new RAFI Communique, focuses on some of the thorny issues involved in
human genetic diversity research. Serious concerns have been raised by the
expansion of patentability to SNPs and by the numerous corporate
privatize human genetic diversity, especially through large-scale sequencing
programs and proprietary databases. The current status of the Human Genome
Diversity Project (HGDP), the problem-plagued global initiative to collect and
sequence human genetic diversity, is discussed; so is its commercial value.
report urges action at various levels. At the international level, action must
be expected from the UN Human Rights Commission, from the World Health
Organization, and from UNESCO’s International Bioethics Committee (which has
woefully neglected the intellectual property and commercial issues arising
human DNA collection). Nationally, governments could review their medical
ethics and research protocols to guarantee the rights and dignity of!
their citizens. In particular, governments might consider legislation that
would criminalize the collection or removal of human germplasm without the
prior informed consent of the individual, their community, and the national
RAFI s new report, Phase II for Human Genome Research - Human Genetic
Enters the Commercial, is available on RAFI s web site,
For more information, contact:
Hope Shand, RAFI,
Tel: 919 960-5223, firstname.lastname@example.org
Julie Delahanty, RAFI
Tel: 819 827 4494, email@example.com
Pat Mooney, RAFI,
RAFI, the Rural Advancement Foundation International, is an international
society organization headquartered in Canada. RAFI is dedicated to the
conservation and sustainable use of biodiversity, and to the socially
responsible development of technologies useful to rural societies. RAFI is
concerned about the loss of agricultural biodiversity, and the impact of
intellectual property on farmers and food security.