EMBARGOED FOR RELEASE: 21 FEBRUARY 2001 AT 14:00 ET US
Contact: Claire Bowles
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New Scientist
Patient power
People with inherited diseases are ready to challenge pro-lifers
over the future of medical research
Patient power is getting a global voice through a new movement to
represent people with a range of hereditary diseases. The grouping will
support, and may ultimately control medical research into these
illnesses. Its backers also aim to challenge anti-abortion, animal
rights and other lobby groups that oppose some forms of biomedical
research.
The movement will have teeth to back its arguments. One group of
supporters has applied for patents on a gene which causes the
distressing disease pseudoxanthoma elasticum. "With the heavy stick of
holding a patent on the gene, we can accelerate the research process,
control royalty and licence fees, and eliminate turf wars between
researchers," says Patrick Terry, chairman of the advocacy group PXE
International, based in Sharon, Massachusetts.
People with PXE accumulate calcium in their tissue, which gradually
sags, cracks and loses its elasticity. Many sufferers go blind by the
age of 30 or 40 because of damage to the retina. Terry, who has two
children with the condition, worked with other sufferers to finance a
patent application on ABCC6, the gene which causes PXE when faulty. It
was identified last year by Charles Boyd of the University of Hawaii and
other researchers backed by PXE International. "We're not interested in
lining our pockets. We just want a cure," says Terry. He sees holding
the patent as a way of empowering patients, the people who have most to
gain from research into the condition. In the long term, PXE ternational
may also be able to influence, and to some degree control, the
direction of research into the disease.
The idea of patients applying for patents is just one new strategy
for what could become one of world's most powerful political lobbies.
Earlier this month, at the BioVision meeting on biotechnology in Lyon,
France, Terry combined with delegates from other groups representing
patients with rare hereditary conditions to form a global alliance.
Founders include the British-based Genetic Interest Group (GIG), the
Genetic Alliance in the US, plus patient groups from the Netherlands,
Belgium and Iran.
"We want a spot at the negotiating table," says Terry. "The voice
of the patient has not been heard. It's a matter of empowering
communities to speak clearly and more vocally," he says. Terry says the
idea will be taken forward at a meeting in Vienna in May of the European
Alliance of Patient and Parent Organisations for Genetic Services and
Innovation in Medicine (EAGS). Terry doesn't rule out the idea of
expanding the alliance to include charities focusing on more widespread
illnesses such as cancer. "We need to give attention to multifactorial
diseases," he says.
"We hope to provide a new voice internationally to support the
application of good science to alleviating problems of ill health," says
Alastair Kent, director of GIG and president of the EAGS. The new
alliance will attempt to win the moral high ground from anti-abortion
and antivivisection groups, he says. It could, for example, challenge
the absolute opposition by anti-abortionists to research on human eggs
or early embryos.
To opponents of embryo research who say it's wrong to destroy a
potential human being, Kent says: "It's a very theoretical future person
they're talking about, as opposed to a very real, living person who's
having to cope with a serious disease."
Similar arguments might be deployed against opponents of animal
testing. Without research on animals, "you're putting the protection of
the animal ahead of the cure for a human being", Kent says. Patients are
"real people living real lives", says Terry.
The new alliance will be looking for consensus among its members
when developing its global policies. That may be difficult to achieve in
some cases, says Greg Vines, a spokesman for Britain's Parkinson's
Disease Society.
He says it could be difficult to reach a unified position on embryo
research, for example, if patient advocacy groups are divided along
religious lines. This hasn't stopped the Parkinson's society backing the
new alliance.
"Policy makers want to meet people with disease," Vines says. The
society lobbied for patients last year when
Britain was considering changing the law on stem cell research and
therapeutic cloning.
Author: Andy Coghlan
New Scientist issue: 24th February 2001
Please mention New Scientist as the source of this story and, if
publishing online, please carry a hyperlink to:
http://www.newscientist.com
--
Judith Richards, London, Ontario, Canada
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