PROJECT: JTC2023 - ELSA: PRIVETDIS

Project aim: The aim of the project is to map and analyze the perspectives of persons with disabilities (PWD) regarding mental privacy and brain data protection and to integrate this understanding in the ethical and legal analysis regarding the multi-level regulation and governance of neurotechnologies. Work plan: In year one, we will (a) perform interdisciplinary conceptual work on mental privacy, (b) perform takeholder research with PWD and patients with neurological disorders in Germany and Spain and (c) analyze international human rights laws and data protection laws and regulations regarding their relevance to mental privacy and the rights of PWD. In year two, we will (d) synthesize the results from the stakeholder research and gather data on perspectives from researchers and neurotechnology developers. We will then (e) integrate the legal analysis of human rights laws and data protection laws. In year three, we will synthesize the results for a comprehensive ethical risk assessment and guideline on ethical, legal and social aspects (ELSA). Exploitation of the results: The project will deliver important conceptual clarifications regarding mental privacy in relation to fundamental rights and data protection. For PWD, it will deliver concrete means for an informed ethical risk assessment of emerging technologies. For policymakers and regulators, it will provide ELSA guidelines regarding the responsible innovation and use of neurotechnologies in the context of disability.