A Blood Drive Serves U.S. Genetic Research

 

TOUTUO, China They came from distant villages and scattered rural shacks, trudging miles by foot across precipitous terrain and muddy green tea fields.

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Women left the open ditches where they washed the family clothes, dragging children along with them. The men joined in. Fifteen hundred people answered the call.

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Among them was Wang Guangpu, 26, who makes $36 a month cutting hair in a hut made out of reeds in the Toutuo town center, a 100-meter (330-foot) strip of crumbling structures on a rutted dirt road.

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"We were told there would be free medical care," he said. "So of course everybody came out."

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There was a catch, however: Residents had to give blood.

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Few in this impoverished community could afford a doctor otherwise, because economic restructuring has gutted China's free health care system. So, one by one, they extended their arms.

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This was no ordinary blood drive. It was genetic research, a pamphlet explained to participants. But many could not read, and few could have guessed at the tangle of scientific and business dreams that lay behind the project.

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DNA from this region was coveted in the West. Researchers at Harvard University and its corporate sponsor, Millennium Pharmaceuticals Inc., of Cambridge, Massachusetts, believed that the population, isolated by geography here and elsewhere in mountainous Anhui Province, held a treasure of unpolluted genetic material. They felt it could yield medical breakthroughs and perhaps millions in biotech profits.

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Genetic deviations that may cause medical disorders are much easier to identify in a large DNA sample from a relatively uniform gene pool.

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Because it was unusually homogenous, the DNA in the local population's blood "was more valuable than gold," the lead Harvard researcher reportedly told colleagues. Ounce for ounce, that would prove a sound estimate.

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Harvard ultimately reaped millions of dollars in federal grants and private investment for the university and the project's lead researcher because of its access to Anhui's DNA. And Millennium was able to raise tens of millions of dollars from corporate investors.

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Along the way, Harvard allied with researchers in China who sometimes used the coercive levers of the country's government to help round up volunteers.

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Some Chinese who took part complain that the bargain proved one-sided. In Toutuo and elsewhere in Anhui, people such as Wang Guangpu say that the promised medical treatment never materialized.

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The story of Harvard's blood harvest in China highlights a question increasingly asked by medical ethicists as U.S. academic and corporate researchers turn to poor countries to find large pools of willing human subjects: Are some populations too vulnerable for all but the most essential medical research?

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Harvard and Millennium officials say their research adhered to strict ethical guidelines. They say Chinese participants volunteered freely and Harvard kept its commitments.

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"We were very mindful of having the same standards applied to them as in the U.S.," said Harvard's provost, Harvey Fineberg. "Every effort was made to assure that was the case."

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But the same standards may not provide the same protections.

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In November, spurred in part by complaints about the Harvard-sponsored work in Anhui, the U.S. Embassy in Beijing issued an unusual advisory warning U.S. medical researchers against working in impoverished, rural areas of China where "health care is poor and people are unable to protect their rights."

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On the Chinese side, the director of sequencing work for the Chinese Human Genome Project, who has worked with the United Nations on genetic research ethics, offered scathing criticism. "I hope that Harvard and the School of Public Health will understand that the recruiting methods they used in China are unacceptable to the Chinese," he said in an interview.

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The research required thousands of volunteers, nearly impossible to obtain in such a remote place without an experienced guide. Scott Weiss, a prominent Harvard respiratory epidemiologist, had just the person: He had mentored a postdoctoral fellow, Xu Xiping, who came from Anhui and had conducted several public health studies there.

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Local health officials and doctors were recruited to help find study volunteers. Millennium Pharmaceuticals and Harvard picked asthma as the disease to study. It was common enough in the West to make it an attractive target for Millennium.

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The Millennium-Harvard asthma deal provided Harvard with seed money to begin an ambitious genetics research program.

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In 1997, financial details about the Millennium-Harvard deal leaked to the Chinese press and caused a storm of criticism. The idea of U.S. capitalists profiting from China's genetic heritage sparked such a fury that foreign genetic research stalled for a year.

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Ten families from Toutuo with a history of asthma took part in the Millennium study in 1996 and 1997, Mr. Xu said. During that time, Toutuo blood was also harvested from hundreds of residents for hypertension and pregnancy studies by Anhui Medical University and Mr. Xu. Mr. Xu said he was not aware of any complaints from asthma families.

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However, promises were made, a doctor said. "Participants were told they would get free medical care and reduced-cost care, but the research project never gave us the funds to do it."

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Millennium pulled out of Anhui last year, without a significant medical or business discovery to show for its $3.5 million investment. The DNA is still in the data bank, and the company has hopes it will yield clues to disease in the future.

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Back in Toutuo, little has changed for Wang Guangpu, the barber.

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"We Chinese are simple people," he said. "All we want is a little off the price of medical care. It would be better, say, if the price is 100, maybe we'd pay 60 or 70. We didn't even get that."

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This article is part of a Washington Post series on global medical research.

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