To ensure the success of EBRAINS, the research infrastructure that became the product of the Human Brain Project, it is important that the public trusts researcher with their data. In order to do so, it is necessary to engage the public in a conversation about their vision and fears about sharing their data with a European health data infrastructure. Without the trust of European citizens, EBRAINS cannot uphold their end of the ethical and social contract between the European public, the brain researchers and the EBRAINS management. Public engagement can ensure that EBRAINS fulfils its ambition of being socially responsive and ethically responsible.
Fortunately for the entire EBRAINS project and their aims of empowering a new era of brain research, European citizens are not opposed to sharing their data with brain researchers. They do, however, have opinions on the direction of future brain research, that are key for ensuring a socially acceptable practice both for the management and utilization of the EBRAINS data infrastructure.
In 2022, The Danish Board of Technology engaged European citizens and asked them about data sharing for a project like EBRAINS. By applying two different, complimentary engagement methods for a public engagement process across six European countries; Denmark, Germany, England, Spain, Hungary, and Italy. First, a classic workshop format where citizens, are accompanied by experts in different fields. This generated substantiated recommendations. Second, several online, self-organized citizen meetings where participants were guided by a platform with videos and questionnaires. An analysis of the recommendations generated across all six countries was condensed down to five recommendations which were substantiated by the results of the online meetings.
- Establish a multidisciplinary and independent European board to oversee and control the collection, access and sharing of data. A board must also ensure overall compliance with ethical guidelines.
- Communicate outcomes from brain research to the European public in a broad, transparent, and non-scientific way. The results are public goods, and better efforts must be made to ensure that citizens are educated about the outcome of health research and how to engage with it.
- Increase research focus on prevention and understanding rather than primarily medical treatment. This entails a focus on the societal impacts on brain health as well as the interplay between brain health and socio-cultural factors. Therefore, brain research should prioritize engaging with the public, including patients and citizens.
- Change funding priorities for brain research to improve distribution. It should be a priority to broaden the distribution of funds and to also ensure funding for non-profit research. This includes better ethical guidelines for funding as well as maximizing the funding to include overlooked brain diseases.
- Implement a citizen-centered approach to data collection, privacy, and security. This implies designing consent forms that are understandable for the general European citizen and initiating public education about how individual health data is stored, can be accessed, shared, and utilized.
These recommendations clearly show that when European citizens are informed about the current debates in brain research, they have a clear opinion about what brain research practices they find acceptable and how this research should be conducted.
With citizen perspectives collected, it is now up to all involved actors in EBRAINS and brain researchers at large to listen and to consider how to deliberate on the best implementation strategies. The report on recommendations from European citizens contains a detailed explanation of the recommendations themselves and more information about our methodology.