I am working on this project with Michele Loi, an ethicist, a friend and co-author, who has co-written the World Health Organization’s Guidance For Managing Ethical Issues In Infectious Disease Outbreaks.
This is an international call to build a citizen-driven global data collection and analysis framework for COVID data following the MyData principles.
In practice this would mean individuals living through the crisis could collect data about their health (such as body temperature) and their behaviours (such as routes), under their control, so they could first ensure better safety for themselves. This is needed due to the epidemiological parameters, which make it important to be able to “trace back in time” and recover individuals potentially affected. This is why most governments want your data now, and we think we can be better off being ahead of that trend.
The MyData principles are focused on individual empowerment and control over their personal data. Over the past 5 to 10 years an entire community and ecosystem of tools has built around the idea that individuals would be much more confident in how their data would be used if they would provably know their rights would be respected. We have developed tools, frameworks, and a culture that enables us to move fast in building solutions, or in helping others to do so.
The data would need to be both longitudinal (i.e. over a long time) and intrusive. It would need to monitor people’s relationships over time, as this is crucial for understanding the spread not just between individuals but also between communities, ranging from families to cities to countries.
The data collection and analysis would need to be consensual, because any measure in public health imposed through forceful data collection from the top is likely to be counter-productive if it is not first perceived as necessary. We want to show simultaneously that we understand that need, can get ahead of it, and maybe prevent unnecessary interferences with our liberties.
The data collected will need to evolve over time. Indeed, as the virus recedes, the measures to take drastically change. And the virus will recede not just as a big number over the entire population of a country, but by region, neighborhood, community and household, for a risk factor to go down to acceptable levels.
This framework should exist in parallel of nation states. There are many reasons to this. There are many countries whose citizens don’t trust their government, or whose citizens have lost faith in the government’s handling of the epidemic. Even if that is not the case, where I live, in Geneva, the hospital has over 50% of its doctors and nurses who cross the border from France every day. They are simultaneous life savers and huge infection risks. Beyond all this, humans of the world should work together on this, because we can’t wait for governments to figure out how to do it.
The MyData community has started working on this problem. We are building a global governance framework, from the legal and ethical standpoints. We are mobilizing hackers to build the apps that we need. We are mobilizing mathematicians and computational scientists to prepare code to push to the data. We are connecting with governments and international organizations to make sure our efforts have maximally positive impact.