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The overall goal of this project is to explore the challenges to mental privacy posed by consumer and clinical neurotechnologies, and their implications for brain data regulation and governance from a human rights perspective. A particular focus is placed on vulnerable groups, such as persons with physical and/or mental disabilities, who are at greater risk of being subject to abuse, negligent treatment, or discrimination as a result of the use of neurodevices for clinical or non-clinical purposes.
As a first step, the Project examines, from an interdisciplinary perspective, the conceptual and ethical foundations of mental privacy. Key questions here are: What are the essential features and dimensions of mental privacy? Why do we value them? What information about mental states can be factually inferred from brain data? How does mental privacy relate to other conceptualizations of privacy, e.g. ‘informational privacy’? What are the potential privacy risks that may follow the access to brain data?
In considering those fundamental questions, the Project will attempt to identify empirically the perspectives of people with physical and/or mental disabilities, as well as those of people with other specific vulnerabilities that might be marketed to by consumer neurotechnology providers. The results from this empirical research will provide important input for a critical analysis of the perceptions of persons with disabilities as potential users of neurodevices. Central research questions here are: How do citizens evaluate prevalent visions of neurotechnology and brain data? What value do people with special vulnerabilities attach to brain data (for instance, regarding risks of commodification and violation of their mental privacy? What are the expectations, needs, concerns, and challenges of neurotechnologies for mental privacy from the perspective of such individuals in different contexts?
Another key element of the Project is the analysis of mental privacy issues from a human rights perspective. This approach takes place on two different levels: one, more general, concerns the international human rights dimension of the right to mental privacy; the other focuses on the legal protection of brain data at the domestic and European levels. From the first perspective, the project will map the various normative frameworks that have been proposed or that are currently being developed by intergovernmental organizations (UNESCO, UN Council of Human Rights, OECD, etc.) for dealing with neurotechnology and the right to mental privacy. At the same time, the project will clarify whether existing data protection provisions appropriately address the challenges posed by the processing of brain data through neurotechnologies. To this purpose, the analysis of the EU General Data Protection Regulation (GDPR) will be central. On the national level, the Spanish, German, and Swiss data protection regulations will be compared. Drawing on the results of all the above-mentioned work, the project will develop comprehensive ethical and legal guidelines to inform policies, governance, and responsible innovation of neurotechnologies in the context of privacy, with a special focus on persons with disabilities.
Financed by: ERA-NET NEURON (Network funded by the EU Commission). SNSF for the Swiss partner
Duration: From May 2024 to April 2026
