It’s an obligation for any study involving biological or genetic samples of Chinese citizens to obtain permission before data collection, transfer or to have them published on international journals.
The mentioned institutions were criticized for unauthorized transfer of data containing human genetic information to other parts of China or out of the country. Reasons behind the release remained unknown as some of these incidents did not take place recently.
Of which, Beijing Genomics Institute (BGI) and Shanghai Huashan Hospital were under the first for making genetic information available online without prior approval. The data formed part of a larger international study with Oxford University which looked into the genome sequencing of depression and results were published in Nature three years ago.
The paper contained data of more than 10,000 anonymized Chinese female who were either healthy or diagnosed with Major Depressive Disorder (MDD), which BGI is aware that they have no consent to release any supplementary materials from the paper.
Multinational pharmaceutical company AstraZeneca was also on the list for transferring close to 600 human genetic samples to two smaller Chinese companies this July. While another local pharmaceutical company, Wuxi AppTec, was penalized for exporting 5165 human serum samples disguised as animal blood.
The controversy in China
Most countries have a say over how their citizen’s genetic information are to be captured and shared, to avoid related breaches and most of the time, regulations will not impose a constraint on research and development. The act of Chinese ministry of science and technology is believed to reinforced her stand against the possibility of her citizen’s genetic data being exploited for benefits.
However, some scientists feared the rigidity of the Chinese policy could mean a research or analysis team will always have to be stationed in China for any international collaborations because the data cannot leave the country. Others are afraid of the time and administration hassle required to seek government approval over how the data is to be collected and shared. In the long run, China may turn into a lone wolf for genetic research as her rules and regulation contradict with researchers’ will to freely share their information and results.
On the other hand, BGI had accused Chinese media for making senseless association between its 2015 violation and the recent noninvasive prenatal testing (NIPT) project. As reported by Baidu, BGI’s NIPT project recruited more than 140,000 pregnant ladies in China and its result was published in Cell, just 20 days before the government’s reveal.
BGI rebuked that all NIPT project data are still in China and they had only published a summary of it in Cell. Nevertheless, the damage has been done and BGI’s technology is in the limelight again after its NIPT technology was reported unable to defect genetic defects in prenatal this July.
Handling sensitive data in China
The amount of data we can harvest will increase exponentially with better technology. As data is the main source of curriculum for artificial intelligence and related new technologies, it became inescapable when incidents like the above happen.
It’s harmful to mark down innovations while it’s still in its testing phase, even more so when policy does not keep up with its present science and technology advancement. Bear in mind that the above incidents occur at corporate level but more and more people are drawn into “direct to consumer” genetic testing (i.e., 23andMe, Ancestry, Helix etc.). Should individual Chinese be accountable if they export their own saliva to engage in one of these commercial services?
There is no such thing as complete privacy and protection when it comes to genetic materials because of its uniqueness. What can be assured is individuals should have a say to how their data is being employed and all research-purpose data should stay within the project.
Reporting by Hazel Tang
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A science writer with data background and an interest in current affair, culture and arts; a no-med from an (almost) all-med family. Follow on Twitter.