In a low rise building in China Medical City, a sprawling industrial park in the eastern Yangtze Delta, scientists are building one of the world’s largest stores of genetic information. Biobanks like this one hold the promise of unlocking trends in genetic heredity and creating potent new biological drugs.
The potential benefit of these banks has grown in recent years due to a dramatic drop in the expense of doing genetic research. The cost of sequencing a human genome plunged from US$8.9 million in July 2007 to just US$10,500 three years later. Industry watchers expect the price to fall below US$1,000 within a year or two.
The data surrounding human sequencing is set to explode within the next decade. As genetic information becomes more readily available, conflicts over how to use and store this information are also bound to increase. Many in the West fear that genetic data could be misused to persecute those with certain genetics traits or defects, perhaps resulting in insurance company rejections or selective abortions.And with biological medicine still in its infancy, it is unclear whether doctors should disclose to patients the presence of genetic proclivities for diseases they may never get.
In the vault
At the heart of this debate is how biobanks collect, store and use genetic information, and whether these processes infringe the rights of those who donate their genes.
China’s earliest biobank, the Guangzhou Biobank Cohort Study (GBCS), provides a case study in the pitfalls of this process. Wen-Ching Sung, a professor of anthropology at the University of Toronto, described how GBCS collected samples in 2003 through a partnership with a welfare association for the elderly, using methods that would merit a lawsuit in the West.
In one incident reported by “Nanfang City News,” GBCS collected genetic data from 42 elderly association members who had come for a free medical exam. Many were illiterate and none understood that the samples would be used for research. “They came with interests because the director of the [welfare association] branch told them that this was a ‘deluxe medical exam free of charge,’” wrote Sung.
Such collection methods would undoubtedly raise hackles in the West. In China, however, there were no protests or public outrage over this or similar incidents. This should not be taken as a sign that Chinese people have no regard for privacy, said Sung. Rather, it indicates that the Chinese media has yet to lead the public in any conversation about genetic privacy.
Guarding the gene pool
The conversation that has taken place in China has been surprisingly different. It has centered around the threat of “bio-piracy,” or the potential for foreign countries and companies to abscond with Chinese genetic data.
The controversy began in the late 1990s when Xu Xiping, the director of a Harvard University population genetics program, began traveling to remote areas of Anhui province with the goal of collecting 200 million DNA samples. Xu, an Anhui native, intended to analyze the sample for diseases like diabetes, obesity, hypertension and schizophrenia in Harvard’s laboratories.
But the study never got very far. Virulent essays began to appear in the Chinese media about foreigners poaching valuable genetic resources. That put into motion a movement which culminated in legislation making it nearly impossible to export genetic material from China. Those rules continue to complicate life for multinationals that do clinical trials in China, said Helen Chen, a partner at LEK Consulting.
Thus far, China’s ethical debate has differed wildly from that of the West. But questions are just beginning to take shape both within China and abroad, and new conflicts are sure to come to the forefront. “[The debate] is really around, given that genetic data is valuable, can that be misused and misappropriated,” said Chen. “And that debate hasn’t really been worked through.”