The Personal Genome Project (PGP) has expanded its global network to China. PGP China teams up with PGPs in the U.S., Canada, the U.K., and Austria in their efforts to break down barriers that slow the scientific process through an “open-science” approach.
The PGP, founded at Harvard University in 2005, allows individuals to make their genetic and microbial material — including blood, saliva, and fecal samples — along with information about their health, traits, and environmental exposures, free and publicly available to researchers anywhere. The project is founded on the premise that data sharing is critical to scientific progress but hindered by conventional research practice.
Jin Li, a geneticist and member of the Chinese Academy of Science, will direct PGP China out of Shanghai-based Fudan University, of which he is president. As the first open-science initiative in China and the first PGP in a non-democratic society, PGP China raises questions as to how open-source data sharing might work in a country that tightly controls information. But, vying to become a DNA superpower, China could be ready to welcome this powerful, free, and open tool.
“My impression is that each country in the PGP network sees a strong advantage to sharing big data in order to make precision medicine really work,” says George Church, founder of the PGP and principal investigator of PGP Harvard. “Fragmented, siloed, or averaged data is not nearly as useful.”
Precision medicine in China: Closed society, open access
Open science might seem to run counter to a culture in which the government has a stronghold on the flow of information and regulates the ability of citizens to share information via the Internet and social media. But, Church says, “oddly, it strikes me as well-aligned.” In open societies, such as the U.S. and Canada which already have PGPs, there’s so much freedom, Church says, that it can be hard to tell what’s right and what’s wrong. “You actually need standards. You need to share data that you can trust. And that’s what we’re going for.”
In China, Church has found a more enthusiastic response to the PGP than he found previously in the U.S., Canada, and Austria. Fewer concerns about personal privacy and data ownership among individuals, Church speculates, might mean they are more open from the start to contributing their personal health information to science.
In recent years, China has ramped up efforts to become a global leader in genomics and precision medicine. In 2015, the Chinese Ministry of Science and Technology announced plans to invest 60 billion yuan (about 9 billion U.S. dollars) in precision medicine over the next 15 years. Shortly after, China’s National Health and Family Planning Commission established its first clinical practice institution to standardize gene sequencing and perform cancer gene sequencing. The country’s current Five-Year Plan for Science and Technology, its thirteenth such plan, emphasizes precision medicine as well.
The goal for researchers in China is to draw from the scads of genomic data now available to them, information that translates into medical benefits for patients. It’s a perfect climate for China to open its doors to the type of free, open, and hopefully abundant data that the PGP can bring.
“The data doesn’t have to be proprietary,” Church says, who is working with Jin and Michael Chou, a director of PGP Harvard, to roll out the project in China. “They just need to be able to use it to produce proprietary [products]. Our whole project is made to be commercially timely. Even though the project itself is nonprofit, there are many for-profits that have benefitted from it.”
The project of unexpected consequences
PGP is a veritable Wikipedia for genomes: anyone can contribute to it, and anyone can learn from it. “Because you can use it for anything, you see all kinds of unexpected consequences,” Church says. Since 2008, researchers have published at least 37 papers, on topics including diabetes, Rett syndrome, and antibiotic resistance, based on data provided by the PGP.
As such, there’s no telling what discoveries PGP China might yield. But, says Church, “I have ridiculously high hopes.”