The global COVID-19 response exposed the need for sovereign nations to share epidemiological data of all types and develop more effective forms of digital epidemiology. At the same time, nations are struggling to develop aligned approaches that protect data privacy and other human rights. The COVID-19 pandemic also revealed effective digital epidemiology is not just a common need, but a shared need. The health security of one nation is irrevocably tied to the public health of virtually every other nation.
Public health in liberal democracies depends on citizens trusting that their privacy will be protected, digitization of traditional and new forms of information about their health can benefit their lives, and data sharing is not simply a means of financing health or deprioritizing individuals. This is even more important among societal groups that have historically not received quality and affirming health care on par with others in their nation. Transborder data sharing, therefore, requires a privacy-by-design approach.
Numerous proposals by national, supranational and professional groups made over the past year to address these privacy issues usually focused on the generation of principles and guidelines addressing a wide set of broad problems. Guidelines issued by regulators have been criticized as being too general. To be fair to regulators, data issues tend to be specific to the type of data, how it is collected, its use and the parties and technologies involved. However, specific data use cases that provide effective privacy protection can inform broader guidelines, just as specific legal decisions inform the understanding of the law.
We propose a consortium established by national governments to address the most pressing needs of those governments as users of epidemiological data. The consortium would bring together researchers and data scientists with regulators and “data diplomats” as necessary to address pressing and specific challenges in epidemiology identified at the government level as priorities. We call this a research and development consortium, but in this context, the work would encompass not only the science of epidemiology but additionally data science to develop and implement technical solutions to privacy, such as privacy-enhancing technologies. Whether using a regulatory sandbox approach or another form of regulatory collaboration, regulators would also be a vital part of the team.
As a vehicle to pursue common R&D challenges in digital epidemiology, the consortium will need mechanisms to address both intrajurisdictional and cross-border data privacy and regulatory issues. Regulators in all nations attend to national laws and international agreements and take their responsibility to citizens seriously. R&D in digital epidemiology is not, of course, only a matter of sharing personal health or DNA data; contact tracing data from cell phones, for example, will raise very different concerns about intrusive surveillance than targeted data on patient responses to a drug. Therefore, a significant challenge in organizing the consortium will be how to instantiate the capacity to navigate multiple national regulatory processes for specific R&D activities, perhaps by having regulatory personnel assigned specifically to the consortium from member governments. The funding provided by these governments should include financing for epidemiological research, data science and a way for regulators to provide these enhanced capabilities.
An international R&D consortium could deliver immediate value to sovereign nations and health care enterprises by providing the best answers to pressing questions while also highlighting and proposing solutions to limitations imposed by current data sharing and access rules. It could additionally apply privacy-by-design and privacy-enhancing technological approaches to intrajurisdictional and cross-border digital epidemiology, with the goal of improving the current best-available answers and create “precedent” use cases to inform broader guidelines and stimulate further productive sharing of data.
As with any new approach or startup, there are advantages to starting with a small team and an exploratory stance. One approach is for the ministers of science, health and security of the Group of Seven nations to establish a working group comprised of government representatives, health care enterprises, regulators and researchers from all seven member nations.
The pressing tasks for such a working group include providing a research and applications development agenda with a heavy focus on data streams and access. The group should also propose an approach to governance and management of a digital epidemiology research consortium that can meet the legal and regulatory needs of each of the G-7 nations. In a broader sense, the charge is to design an R&D enterprise that can serve the health security needs of all liberal democracies while protecting the rights and privacy of entities and individuals. Starting with the G-7 is not a final step, but instead an approach for working out a template among a small group of liberal democracies to eventually allow for the participation of a much larger number of countries.
Photo by Kyle Glenn on Unsplash
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