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It was RAFI that led the charge against the patenting of the Hagahai's
cell line in 1995. The tiny organization, with a staff of about
a half-dozen, has gone on to earn the wrath of academics and industrial
geneticists for its David-and-Goliath campaign against diversity
research.
According to RAFI and a shifting coalition of other indigenous
groups, the expanding hunt for cures locked within the nuclei
of the isolated peoples is an unsavory replay of an earlier genetic
safari to the Third World.
In the 1970s, big agribusiness firms raided equatorial countries
for lucrative crop hybrids that, with a bit of genetic engineering,
later earned billions in profits--cash that rarely trickled back
to the impoverished farmers who raised the strains initially,
Hammond said.
"Today," he said, "the crop is human beings."
Declarations such as these have sent alarm bells ringing around
the world, especially in the ethnically diverse nations of Asia.
India, which launched its human-diversity project this year, takes
the threat of "bioprospecting" seriously enough to declare its
citizens' DNA a national treasure. Blood samples can't leave the
country.
Meanwhile, RAFI's bioengineering crusade marches on, pushing for
a ban on the patenting of human DNA, demanding that companies
share profits with the populations who offer their genes for commercial
research and lobbying the United Nations to regulate the burgeoning
"human-tissue trade."
Medical-industry spokesmen dismiss such demands as wishful thinking.
Without patents on DNA, they say, few businesses would invest
in the research necessary to develop genetic cures.
"Do I have some theological objection to individuals participating
in and benefiting from the economic upside of such research? No,"
said Kevin Kinsella, president of Sequana Therapies. "But the
picture is far more complex than that. Gene discovery is just
the first step in a 1,000-mile journey to find a therapy. It's
a process that costs us millions and takes years of work. So how
much does somebody who gets his arm pricked deserve?"
Kinsella noted angrily that the Tristan da Cunha islanders who
are participating in his company's asthma studies are not "natives
running around in grass skirts" but the descendants of British
colonists. In exchange for the islanders' blood, he said, his
company has promised to give back free drugs developed from the
research.
Still, even those scientists who are most enthralled by the wondrous
medicine cabinet opened by the foibles of human genetic variation
say that serious moral questions will take years.
When a researcher walks tired and dusty into a village with his
bag of syringes, who does he ask for permission to collect a population's
DNA? The individual donor? The group's religious or political
leader? Who owns a peoples'--not a person's--DNA?
And, more important, how can scientists possibly obtain informed
consent--as is required by most governments--when they can't explain
the profound repercussions of genetic testing to preliterate cultures?
"These are untested waters," said Dunston, the diversity project
planner. "Scientists have to start by learning to treat people
like people, not scientific subjects. After all, this whole exploration
is about sharing what makes us human--scientists are truly part
of the experiment in this case."
Dunston described one of the more serendipitous discoveries of
diversity research that convinced her of its ultimate righteousness:
In seeking organ donors for African-Americans, doctors have found
that in some cases tissue from whites is a closer match than tissue
from other African-Americans.
The reason? African populations are so ancient that they have
diverged into the most genetically variable peoples. Hence, the
differences between two African-Americans could be greater than
those between a white and an African-American, vivid proof that
skin color can mask DNA affinities.
"It would be a shame to lose such insights to fears about commercialization
of DNA," she said, worrying aloud that the diversity project,
whose aim is pure science, is being sullied by the profit-driven
motives of pharmaceutical companies. "This is medicine helping
tear down old ways of thinking about race."
But some, especially those caught in the middle of the gene hunters,
remain deeply ambivalent.
For Pennsylvania's Amish community, whose religious strictures
against outmarriage have kept their gene pool unclouded for almost
three centuries, the issue boils down to accountability and respect
for the sense of ownership kindled by DNA.
"They came, they took blood, they made promises and they never
reappeared," said Rebecca Huyard, a medical administrator in Strasburg,
Pa., who remembers how disease researchers from Johns Hopkins
University collected hundreds of genetic samples among the farming
folk of Lancaster County in the 1970s and 1980s.
"Eventually, people here got fed up with it. They wondered where
their blood was going. It was, after all, our blood, our DNA."
Huyard, who is Amish, said she and her devout, buggy-riding neighbors
fear that their molecular inheritance--the building blocks of
their biological identity--has somehow slipped beyond their control.
She hoped that Amish DNA samples weren't being shared without
the donors' knowledge. She also bemoaned the lack of awareness
about a momentous scientific quest that, however noble, is speeding
ahead almost without public debate.
"Now, we don't trust any of them anymore," Huyard said. She added
that if diversity researchers showed up again in the silo-studded
hills of Amish country, they probably would be turned away politely
but firmly at farm doors.
What she didn't know was that several biotech firms have acquired
Amish DNA and are interrogating it for clues to everything from
Alzheimer's disease to diabetes. That Amish DNA, frozen and cultured
in petri dishes, sits alongside thousands of other human cell
lines in laboratories and refrigerators around the world.
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