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 join those of other meetings promoted by theHuman Brain Project in six countries: Austria, Bulgaria, Poland, Portugal, the Netherlands and Sweden.

The aim of these meetings is to gather recommendations from citizens that can contribute to the process of developing privacy protection and data management policies for the Human Brain Project, as part of the research that is planned. The meetings are coordinated by the Danish Board of Technology Foundation, an organization with extensive experience in citizen participation, acting 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 modelled on the brain". Launched in 2013 as one of two Future Emerging Technologies flagship projects of the European Commission, it has a global budget of more than one billion euros 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 public and citizen involvement.

The research planned in the Human Brain Project will require gathering anonymized patient data stored in hospitals across Europe. Indeed, the use of individuals' information, including personal data, is crucial for 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, in order to ensure a balance between guaranteeing the protection of privacy, on the one hand, and allowing scientific research to advance, in order to achieve breakthroughs in the understanding and treatment of diseases.

The Human Brain Project thus 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 it enough for it to be anonymized? 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 provides that informed consent is not required for the collection and use of anonymized data. Participants offered their opinion on this situation, as well as on the balance between protecting the privacy of the individual and contributing to the common good, i.e. the benefits that scientific research could bring to society as a whole.

The 33 citizens who took part in the meeting in Lisbon were volunteers. They responded to invitations sent out on the radio, in newspapers and on social networks. 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 Almeidathe organizers in Portugal, were joined by scientists from the Institute of Social Sciences at the University of Lisbon in moderating the debate in the six groups formed.