BEIJING (CAIXIN GLOBAL) – With a population of 1.4 billion across 56 ethnic groups, China has an abundance of human genetic resources.
Thus, six years ago, when China proposed in the “13th Five-Year Plan on Science and Technological innovation” to “establish a prospective cohort of one million healthy people and patients with key diseases,” there were high hopes that China would one day establish a biobank like UK Biobank and the “All of US” program in the US.
Since 2006, several regional million-person cohort studies have been funded and carried out as part of the Precision Medicine Research key project under China’s Ministry of Science and Technology.
“The establishment of these million-person cohorts is groundbreaking for bio-medical research in China and provides an excellent basis for standardizing the collection and use of valuable clinical resources,” said Guo Tiannan, assistant professor at the School of Life Sciences, Westlake University.
However, some experts who wish to remain anonymous have shared their various areas of concern.
Concerns over data remittance
The first concern is on data remittance. There are 20 national science data centers where data generated by major special projects need to be remitted according to the Measures for the Management of Scientific Data issued by the General Office of the State Council in March 2018.
One expert who has participated in several cohort closing reviews and did not wish to be named, said that research teams must commit to submitting the data, but which of these 20 centers to hand over this data is not stipulated. “It depends entirely on the convenience of the project leader,” the expert said.
Although the data will most likely be handed over to the National Population Health Science Data Center under the Health and Wellness Commission, or the National Genome Science Data Center under the Chinese Academy of Sciences, there is the possibility that the data could end up in other centers on the list.
“In theory the data can end up being submitted to the National Seismic Science Data Center, however absurd it might sound,” said the source.
Another expert suggested to designate only one data remittance center to avoid unnecessary and duplicated construction of a special genome data review and retrieval system.
The second concern is about the correlation of cohort data. Cohort studies usually involve two types of data: one is genomic, proteomic and other genetic data, and the other is clinical, phenotypic and macroscopic data.
When the two are combined and correlated, they would drive meaningful results for scientific research and industrial development, such as new drugs. Cohorts lacking genetic data have limited practical use.
Unfortunately, most of the million-person cohorts only collect the second type of macroscopic phenotypic data. There’s rarely genetic sequencing conducting after the collection blood and urine samples.
“Sequencing and histology are important, but they are costly too. The main reason (they are not done) is the lack of funding,” the expert said.
Based on his calculation for the per capita funding of sub-topic groups under the “Precision Medicine” cohort, each participant is allocated between 100 yuan to 300 yuan (S$21 to S$63). “It’s not even enough for proper baseline tests,” he added.
As the expenses of processing and storage of high-quality biological samples is often seen as a financial burden by the project team, these biological samples and phenotype data obtained at great cost are often forgotten in dusty corners, instead of being shared, added and correlated as with the UK Biobank.
“Let’s say one lab has got the genome, the transcriptome of 100,000 people, and then there are organizations putting in resources to measure the proteome. After some time, more investments pour in to measure the response to the drug use of this group, the progression of disease, changes of the cohorts’ health status and so on. Over the years, the value of this data would snowball,” Guo said.
“Relying on national funding and hospitals’ input is not sustainable. Ideally, if we benchmark against the Europe and the US, there should be room for commercial entities, non-profit foundations and professional managers. This isn’t just research, it’s an opportunity for business. And for medical research to have a real impact for patients, there must commercial applications. This funding channel has not been realized to the fullest,” added Guo.