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Institutional Indecency

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By Lei Xiong, China Features / Capital Women Journalistsí Association, China

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Eventually, the US government made its determinations regarding the research projects conducted by some famous American institutions, which involved thousands of human subjects in rural China. After two years of investigation, the US Department of Health & Human Services Office of Public Health and Science concluded in late March that 15 Harvard-affiliated genetic studies on diseases ranging from asthma to schizophrenia were faulty, as the Chinese participants’ rights were ignored and violated by the American researchers.

While applauding the long awaited investigation and conclusions on the faulty research projects, we in China are shocked to see the confessions on “the breadth and seriousness of violations” of human rights in the massive blood collection. For as long as almost ten years, researchers from such renowned institutions as Harvard have been engaged in projects that turned out to be problematic in bioethics in many areas. How could this be allowed to happen in the first place?

According to the determination letters addressed to the related institutions, many of the projects were carried out on sites in China before they were reviewed by the Institutional Review Board for approval. The so-called consent from the Chinese participants was not acquired on a fully informed basis. Nobody could imagine these Harvard-affiliated projects could do the same in the United States.

But the determination letters focused the blame on the individual researchers while ignoring the responsibility of those who have funded them. It is true that these researchers failed to honor the principles of bioethics in hunting for genetic resources. Then how about those who provided the money to them? Without their financial support, “the breadth and seriousness of violations” should have been impossible.

Noticeably missing in the list of those to be held responsible is the Millennium Pharmaceutical Corporation in Massachusetts, who put in the seed money to launch the Harvard genetic projects in the mid 1990s. The very first project of genetic studies on asthma funded by Millennium with US$3 million reportedly incurred US$53 million more investment to the corporation in 1995. The Chinese farmers in remote mountainous areas who gave off their precious DNA samples for “free physical checkups” and medical treatment, which never came, had little idea of the commercial involvement in the projects. Nor did they have any clue of the potential profits of their blood.

Should not the Millennium be held responsible for the ethical fault of the research?

Also being left out in the determination letters are the renowned National Institutes of Health (NIH), which granted nine of the 15 problematic Harvard projects in the fiscal year of 2000 alone. And all the nine projects were headed by one single person, Dr. Xu Xiping of Harvard School of Public Health. This is outrageously beside NIH, who is known for its rigorous reviewing process for research grants. As many scientists are proud of obtaining just one NIH grant, the US governmental institutes should have given nine grants to one person, and all the nine projects involved human blood collection in some remote areas in China where the per capita annual income averaged 1,400 yuan (US$170) last year.

As the determination letters put it, farmers in those areas are indeed “vulnerable individuals” and “economically or educationally disadvantaged persons.” Then why did NIH lower its doorway to grant support for projects based on so vulnerable population and proved to have been under so weak oversight?

Some are trying to shirk the US institutions’ responsibility for the faulted research by putting the blame on the Chinese, saying it was Xu Xiping’s Chinese partners who failed to implement the protocols to the letter. Yet it is not the Chinese that initiated and funded the blood projects. They had been US-funded projects, on the list of US governmental institutions’ grants. Those poor Chinese colleagues were just used or abused to help ship the Chinese blood to Harvard. The question is not whether these Chinese are to blame. The question is why the American funding institutions allowed that such disqualified partners to be engaged in human subject studies.

“The breadth and seriousness of violations” of bioethics in these problematic Harvard projects showed a devastating institutional indecency. In these inhuman studies on human genomes, we witnessed looters’ fervor for genetic resources and robbers’ indifference to human rights. As Chinese citizens, we do not expect the US institutions to protect us, no matter how vulnerable we are. We can only repair our own fence and guard against those who are interested more in our genes than our welfare. But as human beings, we have the right to know all those whys, and ask those institutions to honor our rights by giving us a satisfactory answer.

(April 2002