[Adam Minter] China’s rules on genes are too tight

China caused consternation in the tech world by walling off its internet, blocking foreign cloud-computing firms and forcing companies to store data locally if they want to operate on the mainland: Many fear a full-fledged balkanization of the internet. The worry now is that something similar may be happening in cutting-edge gene research.

Late last month, in a move that’s largely been overlooked outside the scientific community, China’s Ministry of Science and Technology announced it had sanctioned six Chinese and foreign organizations for the “improper” collection, trading and export of Chinese genetic information. Among those penalized were China’s leading genomics company, BGI Genomics and leading biotech firm, WuXi AppTec, as well as global pharmaceutical giant AstraZeneca.

While the immediate impact of the moves is uncertain, researchers are concerned that nationalist impulses, rather than a desire for scientific and medical progress, may start dictating how and if China chooses to share its growing repository of human genetic data. Restricting access to science and data generated within its borders would not only isolate Chinese researchers and companies, but slow the pace of medical innovation and the hunt for cures to some of the world’s most difficult diseases.

Global collaboration has been a norm in genetic research for decades and, in fact, China has been an eager participant. In 1999, it became the first and only developing country to join the Human Genome Project, a US-based initiative to sequence the entire human genome. The decision gave China an active role in the development of the new science of genomics, the study of the whole genome rather than single genes.

Since then, the cost of sequencing genes has dropped dramatically, opening up promising new avenues for research. Scientists now understand better how interactions between multiple genes affect specific diseases, for instance. Similarly, they can leverage knowledge of multiple genomes to devise individual treatments for patients based on their genetic makeup, an approach known as personalized medicine.

There’s one catch: The progress of scientific and medical research into genomic data is dependent on having access to lots of genomes from diverse populations. A US-based researcher of gastric cancer, a condition relatively rare in the West, will naturally want genetic information from China, where it’s relatively common.

This creates a market for genomic data -- a development not lost on governments or private entities. China has aggressively grasped at the opportunity. In 2016, the government inaugurated a 15-year, $9 billion program to advance personalized medicine and genomics. Profit isn’t the only motive: China is facing a serious health care crisis and the government hopes personalized medicine will help bring down the costs of addressing it. And, as with China’s other efforts to boost favored industries, the country also aims to supplant the US as a leader in genomics research.

China first began erecting a thicket of regulations related to the trade of genetic information as early as 1998, largely to protect patient privacy. Over time, however, and especially in recent years, the rules about gene research have evolved to mirror China’s tech regulations, which require companies to store, process and analyze Chinese user data in China.

The government is approaching the issue as if it has something to lose if foreign researchers learn from China’s genomes. Naturally, it’s wary of the country’s genetic heritage being exploited by foreigners and not sharing in the benefits. At the same time, it’s treating Chinese genes as it does other forms of Chinese data -- as a national security matter. Current regulations prohibit the export of genetic data without express state permission, while foreign researchers must collaborate with Chinese partners if they want to collect or access genomic data in China.

China’s stance is eroding the traditions of open science. The journal Nature recently reported that a consortium of Chinese and foreign researchers didn’t publish the data from a recent study because getting approval would have been too much trouble and time-consuming. If foreign scientists go further and stop seeking out partnerships with Chinese researchers, the latter will suffer as much as anyone. The problem will only grow if foreign governments retaliate by keeping their gene data to themselves, too.

It doesn’t have to be this way. Throughout the global genomics community, there’s strong interest in creating platforms to share data. Already, 18 countries have signed a 2018 European Union declaration on linking genomic health data across countries to create cohorts that are big enough to be clinically impactful. Elsewhere, more than 500 organizations globally have formed the Global Alliance for Genomics & Health to develop standards for genomic sharing that place patient rights first.

Rather than focus on what it perceives to be its own national interest, China should lead the way in developing global rules that similarly protect patients and intellectual property, while encouraging as much sharing and collaboration as possible. With its wealth of genomic data -- and mounting health problems -- it’ll gain as much as anyone from more, not less openness.


Adam Minter
Adam Minter is a Bloomberg Opinion columnist. -- Ed.

(Bloomberg)