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 views and recommendations will join those of other meetings, hosted by the 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 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 projects of the European Commission's Future Emerging Technologies, it has a global budget of more than one billion euros, for 10 years, and brings together research centers from more than 20 countries, European and non-European, including, in Portugal, the Champalimaud Foundation.

In recognition of the social, ethical and philosophical impacts of its research, the Human Brain Project 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 anonymised patient data, stored in hospitals across Europe. Indeed, the use of information from individuals, including personal data, is crucial for the advancement of knowledge in various scientific areas. Throughout the world, access to and use of personal data is regulated by national and international laws, in order to ensure a balance between ensuring the protection of privacy, on the one hand, and enabling the advancement of scientific research, so that advances in the understanding and treatment of diseases can be achieved.

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 several issues related to this type of data collection. Questions such as how this data should be protected: will it be enough to anonymize it? Who, and which organizations, have the legitimacy to collect the data? And to use them?

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 opinions on this situation, as well as on the balance between protecting individual privacy and contributing to the common good, that is, 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 issued 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, had the collaboration of scientists from the Institute of Social Sciences, University of Lisbon, in moderating the debate, in the six groups formed.