By Matthew Chun
International collaboration through the sharing of health data is crucial for advancing human health. But it also comes with risks — risks that countries around the world seem increasingly unwilling to take.
On the one hand, the international sharing of health-related data sets has paved the way for important advances such as mapping the human genome, tracking global health outcomes, and fighting the rise of multidrug-resistant superbugs. On the other hand, it can pose serious risks for a nation’s citizens, including re-identification, exploitation of genetic vulnerabilities by foreign parties, and unauthorized data usage. As countries aim to strike a difficult balance between furthering research and protecting national interests, recent trends indicate a shift toward tighter controls that could chill international collaborations.
The Rise of Big Data in Healthcare
The 21st century has ushered in a “big data” revolution in healthcare, promising improved evidence-based care, accelerated medical innovation, decreased healthcare costs, and more. And even greater potential is unlocked when data can be pooled (and accessed) from around the world. For a sense of the massive scale of such international undertakings, a few examples of international health-related datasets are provided below, including:
- The 1000 Genomes Project: “[A] collaboration among research groups in the US, UK, and China and Germany to produce an extensive catalog of human genetic variation that will support future medical research studies,” including the genomes of over 1,000 unidentified individuals from around the world.
- The Global Health Data Exchange: “The world’s most comprehensive catalog of surveys, censuses, vital statistics, and other health-related data,” including data from 1990 to 2019 on mortality and morbidity in 204 countries and territories, which spans 369 diseases, injuries, and impairments, and 87 risk factors.
- The International Agency for Research on Cancer (IARC) BioBank: “[O]ne of the largest, most varied and richest International collections of samples in the world,” including 5.1 million biological samples (plasma, serum, urine, DNA, etc.) from 562,000 individuals.
- The Comprehensive Resistance Prediction for Tuberculosis: an International Consortium (CRyPTIC) data compendium: A data compendium of the genomes of 12,289 tuberculosis isolates, including drug resistance data, collected across 23 countries.
Increasing Security Concerns
While international collaboration sounds great on paper, it also introduces a whole host of tensions. In particular, as countries increasingly have begun to recognize health data as a vital national resource, the impulse to protect such data has risen as well.
Take, for example, China. Naming genomics as an important priority in its Made in China 2025 plan, China has increasingly clamped down on the sharing of Chinese nationals’ data outside of the country’s borders. In 2019, China announced a new law prohibiting Chinese organizations from sharing genetic data with foreign groups without government approval. This was followed by the adoption of China’s Biosecurity Law in 2020, China’s Data Security Law in 2021, and draft guidelines issued by China’s Ministry of Science and Technology (MOST) earlier this year, providing detailed instructions on the management of genetic resources.
Other countries have taken notice. In response to the increasing control of the outflow of Chinese genetic data, U.K. Government officials recently have expressed concern about the open-access sharing of U.K. citizens’ health data with China. In the context of the COVID-19 pandemic, the United States has also chimed in on the flow of U.S. citizens’ data through labs that have Chinese ties, with the National Counterintelligence and Security Center issuing a warning that “[f]oreign powers can collect, store and exploit biometric information from COVID tests.” Meanwhile, a recent report from the Australian Strategic Policy Institute expresses concerns that “countries like Australia risk being exploited and left behind” by China’s advances in research and development, and should therefore “limit the ease of access [of genetic data] by foreign companies and governments.”
A Chilling Effect on Global Health Research
As countries become more sensitive to the risks of sharing their citizens’ health data and move toward siloing this important resource, international collaborative research will become increasingly difficult. The precise effects of China’s more restrictive data-sharing policies — and the world’s response — have yet to be seen. But there is reason to believe that, at least in certain areas of health research, an increased nationalistic approach is already having a chilling effect on international collaborations.
Finding a satisfactory way forward from our current predicament will prove difficult. Ideally, countries would be able to establish increased levels of trust. But if that is not possible, countries may need to rely on lower-trust strategies such as threats of Mutually Assured Destruction, which have been previously theorized in the realm of cyberwarfare. That said, even setting aside the serious ethical issues of such approaches, whether or not credible threats to misuse foreign health data could adequately deter similar unwanted behavior from other countries is entirely unknown.
Right now, only one thing is certain. As long as countries fear their civilians’ data being stockpiled and weaponized against them, truly open global collaboration will be hindered. With so much at stake for the future of human health, government leaders and policymakers around the world must make it a priority to consider all options.