In Europe we like to point out that we live in free democratic societies. Almost unknowingly, however, we have entered a new digital serfdom under the reign of multinational data companies that offer free services for which we pay with our own data.
Personal data is sometimes called a new asset class or the oil of the 21st century. The competition for these data is fierce. In 2014 Rock Health, a Silicon Valley firm, invested $4.1 billion into mobile health (mHealth) companies because they sell apps and devices that automatically collect personal data. These investments are made on the promise that personal data can be sold to data brokers.
mHealth companies are hardly alone in the data-collection frenzy.
New educational platform like Coursera, Udacity, Knewton and Khan Academy provide free high-quality education, but in return they record a student’s every click.
These data provide a far more detailed student profile than do traditional degrees and certificates. Still, none of these companies can extract the maximal value of personal data, which lies in the aggregation of different data sets.
Google and Facebook may know more about my health than my doctor, but even they cannot aggregate all my personal data because they don’t have my medical records, grocery shopping list, genome or other data. Not only are all these data stored in inaccessible silos, but data- protection laws strictly control the use of medical information.
In the human information system, the integration point is the individual. We must thus empower individuals to control the use and aggregation of their data. They should be the ones who decide if their data will be shared with a doctor for a second opinion, with friends or with the scientific community to promote medical and clinical research.
The advent of mHealth has made patients central players in advancing medical knowledge. By recording their physical activity, health parameters and the side effects of drugs on their smartphones, they can contribute to post-market adverse-effect surveillance studies, health-technology assessments and evidence-based medicine in general. Giving citizens control of their data and engaging them in medical research is also a moral obligation since it saves lives and makes healthcare more affordable.
European countries should write the digital self-determination of their citizens into their constitutions, which is what we are proposing in Switzerland. Moreover, people should be encouraged to collect and manage their information in personal-data cooperatives that are owned and controlled by citizens. These cooperatives would represent their interests, ensuring that a significant part of the economic value of personal data would revert to society. The result would be a democratisation of the personal-data economy – and the end of digital serfdom.
ERNST HAFEN is a professor of developmental biology and deputy head of the Institute of Molecular Systems Biology at ETH Zurich. He is a founding member of the Association Daten und Gesundheit and MIDATA Cooperative.