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Citizens’ views on issues of privacy and data protection in medical research

Last Saturday, 33 Portuguese citizens gave up their morning to discuss issues around the use of personal data for research. Their views on privacy and data protection will feed into a series of citizen meetings hosted by the Human Brain Project (HBP), in six countries: Austria, Bulgaria, Poland, Portugal, the Netherlands and Sweden.

The goal of these meetings is to gather citizens’ recommendations for how HBP may develop policies for privacy protection and management of the data gathered for the research that the consortium carries out. The Danish Board of Technology Foundation, with its extensive experience in citizen participation, is coordinating these meetings, working with local organisers in each country.

The Human Brain Project aims to “accelerate our understanding of the human brain, make advances in defining and diagnosing brain disorders, and develop new brain-like technologies”. Launched in 2013, as one of two European Commission Future and Emerging Technologies Flagships, it is a 10-year, one thousand million euros consortium, bringing together research centres from over 20 European and non-European countries, including the Champalimaud Foundation, in Portugal.

Recognising the social, ethical and philosophical implications of it’s research, the HBP has set up a programme to identify and address these issues, with public engagement at its core.

HBP’s research will require collecting patients’ anonymised data that is stored in hospitals across Europe. Collecting data, including personal data, is crucial to progress in many research areas. Several safeguard mechanisms are in place, across the world, to ensure a balance between protecting a person’s privacy and allowing scientific research, which ultimately leads to advancements in understanding and treating disease.

HBP plans to collect data from, for example, brain scans, treatment data, psychological assessments, genetic information. At Saturday’s meeting, participants were asked to reflect and discuss several of the issues that arise around this type of data collection. Questions such as how personal data should be protected: does anonymisation offer enough protection? Who or what organisations may legitimately collect personal data? And who can have access to the data?

The issue of informed consent is particularly challenging. Currently, under European law, informed consent is not necessary for anonymised data. Participants were asked about their views on this, as well as on the balance between protection of an individual’s privacy and contributing to the common good, that is, to the benefits that scientific research may bring to all of society.

The 33 citizens at the Lisbon meeting volunteered to take part in response to radio and newspaper advertisements, and through social media awareness. Aged between 24 and 80, with varying levels of education, they were selected with a view to gather a representative sample of the Portuguese adult population. Silvia di Marco and Mara Almeida, the Portuguese organisers, worked with social science researchers at the Instituto de Ciências Sociais (University of Lisbon) to facilitate the debate in six groups of citizens set up in the meeting.