Prof. Ernst Hafen is a professor of Systems Biology at ETH Zurich and president of the MIDATA Cooperative. This is Part 1 of 2 episodes covering citizen science, personal data cooperatives, and how individuals can take ownership of their health data to drive drug discovery.
The Concept of Data Cooperatives
At the heart of Ernst Hafen's vision is a simple but powerful idea: citizens should own and control their own health data. In the current landscape, personal health data is scattered across hospitals, insurance companies, fitness trackers, and tech platforms — with little input from the individuals who generated it.
The MIDATA cooperative offers a radically different model. Citizens pool their data collectively, much like agricultural cooperatives where farmers pooled resources to gain market power. By organizing as a cooperative, individuals retain democratic control over how their data is used in research.
How Personal Data Can Accelerate Drug Discovery
When health data from thousands — or even millions — of citizens is aggregated in a structured, consented manner, the potential for drug discovery is enormous. Researchers gain access to real-world data that can:
- Identify disease biomarkers earlier and more reliably
- Enable more targeted clinical trial recruitment
- Provide longitudinal health data that reveals disease progression patterns
- Support post-market surveillance of approved drugs
Citizens as Active Participants, Not Just Subjects
One of the most compelling aspects of Ernst's work is the shift in mindset it demands. Traditionally, patients and healthy individuals are passive subjects in research — providing samples and data but having no say in how these are used. The MIDATA model flips this dynamic entirely.
Citizens should not just be data sources — they should be active participants who decide what research gets done with their data.
Privacy and Data Ownership in the Genomics Era
As genomic sequencing becomes cheaper and more widespread, the question of who owns your genetic data becomes increasingly urgent. Tech companies monetize personal data as a core business model, often without meaningful consent from users. Ernst argues that this creates a fundamental tension:
- Tech companies treat personal data as a commodity to be extracted and sold
- Citizens deserve sovereignty over their most intimate information — their health and genetic data
- Cooperative structures provide a legal and organizational framework for citizen control
Switzerland's Role in Pioneering Citizen-Driven Research
Switzerland, with its strong tradition of cooperatives, direct democracy, and privacy-conscious culture, is uniquely positioned to lead the citizen science movement. The country's robust regulatory framework and world-class research institutions at ETH Zurich and beyond provide fertile ground for these new models of data governance.
The Agricultural Cooperative Analogy
Ernst frequently draws comparisons to agricultural cooperatives, where farmers realized that by pooling their resources — milk, grain, purchasing power — they could negotiate better terms and invest in shared infrastructure. The same logic applies to health data:
- Individual data has limited value in isolation
- Aggregated data becomes enormously valuable for research
- Cooperative ownership ensures the value flows back to citizens, not corporations
- Democratic governance means citizens decide the research priorities
Looking Ahead
In Part 2 of this interview, we continue the conversation with Prof. Hafen about translating academic science into real-world medicine and the future of healthcare by 2040.
About Bio2040
There are so many challenges in drug discovery. We are a group of entrepreneurs and scientists who want to improve things.
Subscribe to the Podcast on iTunes
Be in the know and sign up for the newsletter.
Follow Flavio on Twitter here.