In late August, a letter landed
at the doorstep of US Congress demanding free and open
access to the published results of taxpayer-funded medical
research. The letter assailed as "prohibitively expensive"
the subscription rates of the for-profit scientific journals
that regularly publish this research. The letter was signed
by a group of 25 Nobel laureates in chemistry, and physiology
and medicine.
The Nobel laureates didn't write
this letter because they gambled away their prizes at
Las Vegas and can't afford the journals. Nor should
we dismiss the eminent scientists as a pack of tightwads.
Their motivation was much purer: these mental titans
feel strongly that hoarding data, or making it only
available at great cost, hinders medical research, particularly
in poor countries. This letter is part of a growing
movement, known as 'open source medicine,' that seeks
to harness international altruism and volunteerism and
develop patent-free drugs for diseases drug companies
have little profit incentive to study.
ANCIENT
GEEK HISTORY
The term 'open source' has been borrowed from the freely
distributable, patent-free software movement, most famously
exemplified by the Linux operating system developed
by Finnish ?ber-nerd Linus Torvalds. Instead of jealously
guarding his work, or trying to sell it to the highest
bidder, in 1991 the young programmer decided to give
away the program and its source code to anyone who wanted
to look at it.
The genius of the open source setup
is that it allows skilled folks around the world to
scrutinize the code and contribute improvements. The
approach has largely worked for Linux, and the software
has improved over time and, more importantly, filled
a niche ignored by the private sector. In medicine,
there's a rather large, unprofitable niche area just
waiting to be filled ? the search for tropical disease
cures.
THE
BIG IDEA
After Linux sparked the code-sharing free for all, medical
research realized its potential for their own patent-heavy
realm. Law professors Stephen Maurer (Berkeley) and
Arti Rai (Duke University), and biopharmaceutical researcher
Dr Andrej Sali (University of California at San Francisco)
recently wrote a paper in the (naturally free) e-book
Biotechnology: Essays From Its Heartland that
asks the question: "Finding cures for tropical diseases:
Is open source an answer?" According to the authors,
the answer to that question is an unequivocal 'yes.'
There are about 500 million, mostly
poor, people afflicted by tropical diseases, and drug
discovery is badly lagging is this area. Professors
Mauer and Rai and Dr Sali think they've got the solution
to this problem. They propose setting up an international
project to be called the Tropical Disease Initiative
(TDI). Its goal would be to pool the brains of international
researchers and discover patent-free tropical disease
drugs that could be cheaply distributed in poor countries.
The proponents of the TDI recognize
that the status quo works well in discovering drugs
for conditions common in the developed world, but that
a different model is needed for Third World ills. In
fact, they feel the TDI would be a great outlet for
drug company corporate philanthropy ? for instance,
drug companies could donate lab time to projects. Moreover,
the TDI proponents don't think their plan is the answer
for everything: "Open source is not magic," they write.
"In the end nothing will happen unless Western governments
and charities foot the bill."
GARDEN
OF GENOMES
To understand how a project like the TDI would work,
the best model to use for comparison is probably the
international Human Genome Project (HGP). The HGP was
not exactly like an open source medicine project (for
example the leadership structure was quite a bit more
'top-down' than the TDI proponents envision), but it's
a pretty close match.
Dr Thomas Hudson, professor of
human genetics and immunology at McGill, and the founder
and director of the Montreal Genomics Centre, worked
on the HGP and saw firsthand the good, the bad and the
ugly sides of massive international cooperation in scientific
research. "There was much controversy about approaches
used by the international consortium," says Dr Hudson.
"The controversies over what approaches should be used
yielded both positive ? that is scientific ? and negative
? ego-related ? debates."
THINKING
ALIKE
But on the issue of public access, there was a broad
consensus. "There was no controversy on the need to
make the data publicly available every day," says Dr
Hudson. "In the 'high throughput phase' of the project,
findings were posted on public websites within 24 hours."
Dr Hudson feels that some of the
private biotech firms (he names Celera as an example)
involved in the HGP behaved contemptibly at times. "Sequencing
by private companies yielded tremendous controversy,"
he says. "The initiative forced the international consortium
to get their act together more quickly."
The problem lay with a tendency
for these firms to keep findings under wraps. "The non-release
of this sequencing data, except with exorbitant subscription
costs, was criticized heavily ? for good reasons," says
Dr Hudson. When asked if he thought the structure and
scale of the HGP could be up to the task of discovering
new drugs, Dr Hudson doesn't hesitate: "Yes ? I do!"
open source medicine online
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