Chu Mianzhai, a farmer from Toutuo Town in Yuexi County, Anhui Province, disclosed in a letter that genetic studies conducted by Harvard University did not conform to standard ethics codes.
The genetic studies, using blood collected from many farmers in China, aroused grave concern from the public after media exposure early last year.
Some people point out that science, while important to the advancement of people and health, is not an autonomous entity independent from society. Scientific research must respect human dignity.
In fact, the United States, Australia and India have enacted laws requiring doctors and researchers to inform individuals of their treatment or research.
In his letter to me dated December 31, 2001, Chu recalled how he signed the so-called "informed consent form" that some investigators have claimed he signed in October 1997.
"At the time the Toutuo Hospital issued a document paper, on which were some tiny characters," he wrote. "What these words meant were not discernible to me (as I did not bring my reading glasses with me). Nor did they (referring to the people from the hospital) tell me what it was for. I was just asked to sign it. Perhaps it was the "informed consent form."
Chu, 61, and his wife and two daughters gave blood twice to the Harvard genetic study, without knowing which specific projects they were participating in. In my interview with him at his home a year ago, Chu said he first gave blood in November 1996. He and his family members were asked to give blood again in March 1997, but "there were not as many villagers the first time," he said.
Some villagers declined to go the second time, he recalled, "but I was willing to do it because I wished to get some medical treatment for my daughters, especially the eldest one. She wheezes rather severely in spring time."
But he said the expected treatment never came.
Toutuo was one of the sites for the Harvard genetic study of asthma between 1994 and 1998, with Dr Xu Xiping of Harvard School of Public Health as the principal investigator. But Chu Mianzhai said he had no idea about it, let alone that the project was funded by the National Institute of Health of the United States (NIH).
The media's coverage of the issue, Chu wrote in his letter, "is out of responsibility for the collaboration project on genetic studies as well as for the ordinary Chinese people and the Chinese nation."
A sample "informed consent form" offered to me last January by a local doctor who was involved in the blood collection for the Harvard projects, indicates that the blood taken is part of a genetic study co-sponsored by Harvard University and some Chinese medical institutions.
In the fiscal year of 2000, Xu Xiping headed nine projects funded with NIH grants amounting to nearly US$4.2 million. All of these projects involved blood collection in poor areas in Anhui. Xu claimed in earlier media interviews that his projects would involve screening 200,000 Chinese. Some American physicians were impressed that so many people could be screened at such a low cost.
By contrast, the number of collaborative projects approved by the Chinese government up to January 2001 was only three, which did not include the asthma project.
Amidst the controversy over the bioethics of Harvard projects in Anhui, the Washington Post ran a report last June, saying two Chinese officials told the US Embassy in Beijing that the Chinese probes showed up no evidence against the projects.
However, Wang Yu, deputy director of the State Administration of Human Genetic Resources, said in a conference on August 8, 2001 that no official from the administration was authorized to meet US Embassy officials in Beijing and no official was authorized to make that statement.
Even the Chinese authorities' investigation on the Harvard projects in Anhui, first conducted in late March of 2001, "have yet to reach any official conclusion," he said.
Medical people and journalists in China are continuing to investigate the case, to make sure that Chinese people's rights and bioethical principles were not violated in cross-border genetic research.
The author, Xiong Lei, is a senior journalist with China Features, Xinhua News Agency.
(China Daily January 10, 2002)
