Citizens' views on privacy and data protection for medical research

Last Saturday, 33 Portuguese citizens gave up their morning to discuss issues related to the use of personal data for research. Their opinions and recommendations will be added to those of other meetings promoted bythe Human Brain Project in six countries: Austria, Bulgaria, Poland, Portugal, the Netherlands, and Sweden.

The purpose of these meetings is to gather recommendations from citizens that can contribute to the process of developing privacy protection and data management policies by the Human Brain Project, within the scope of the planned research. The meetings are coordinated by the Danish Board of Technology Foundation, an organization with extensive experience in citizen participation, working with local organizers in each country.

The Human Brain Project aims to "accelerate the understanding of the human brain, advance the characterization and diagnosis of brain syndromes, and develop new computer technologies modeled on the brain." Launched in 2013 as one of two flagship Future Emerging Technologies projects of the European Commission, it has a total budget of over €1 billion over 10 years and brings together research centers from more than 20 European and non-European countries, including the Champalimaud Foundation in Portugal.

In recognition of the social, ethical, and philosophical impacts of its research, the Human Brain Project has created a specific program that aims to identify and analyze these issues, with strong involvement from the public and citizens.

The research planned in the Human Brain Project will require gathering anonymized patient data stored in hospitals across Europe. Indeed, the use of information about individuals, including personal data, is crucial to the advancement of knowledge in various scientific fields. Around the world, access to and use of personal data is regulated by national and international laws to ensure a balance between protecting privacy on the one hand and enabling scientific research to advance, leading to breakthroughs in the understanding and treatment of diseases on the other.

The Human Brain Project plans to collect data contained in, for example, CT or MRI images of the brain, data on medical treatments, psychological assessments, and genetic information. At Saturday's meeting, participants were invited to reflect on various issues related to this type of data collection. Questions such as how this data should be protected: is anonymization sufficient? Who, and which organizations, have the legitimacy to collect the data? And to use it?

The issue of informed consent is particularly challenging. Currently, European law stipulates that informed consent is not required for the collection and use of anonymized data. Participants offered their views on this situation, as well as on the balance between protecting individual privacy and contributing to the common good, i.e., the benefits that scientific research can bring to society as a whole.

The 33 citizens who participated in the meeting in Lisbon were volunteers. They responded to invitations broadcast on the radio, in newspapers, and on social media. Aged between 24 and 80, they were selected with the aim of constituting a representative sample of the adult Portuguese population. Silvia di Marco and Mara Almeida, the organizers in Portugal, enlisted the help of scientists from the Institute of Social Sciences at the University of Lisbon to moderate the debate in the six groups that were formed.