Towards a Governance Framework for Brain Data Article - Juin 2022

Marcello Ienca, Joseph J Fins, Ralf J Jox, Fabrice Jotterand, Silja Voeneky, Roberto Andorno, Tonio Ball, Claude Castelluccia, Ricardo Chavarriaga, Hervé Chneiweiss, Agata Ferretti, Orsolya Friedrich, Samia Hurst, Grischa Merkel, Fruzsina Molnár-Gábor, Jean-Marc Rickli, James Scheibner, Effy Vayena, Rafael Yuste, Philipp Kellmeyer

Marcello Ienca, Joseph J Fins, Ralf J Jox, Fabrice Jotterand, Silja Voeneky, Roberto Andorno, Tonio Ball, Claude Castelluccia, Ricardo Chavarriaga, Hervé Chneiweiss, Agata Ferretti, Orsolya Friedrich, Samia Hurst, Grischa Merkel, Fruzsina Molnár-Gábor, Jean-Marc Rickli, James Scheibner, Effy Vayena, Rafael Yuste, Philipp Kellmeyer, « Towards a Governance Framework for Brain Data  », Neuroethics, juin 2022

Abstract

The increasing availability of brain data within and outside the biomedical feld, combined with the application of artifcial intelligence (AI) to brain data analysis, poses a challenge for ethics and governance. We identify distinctive ethical implications of brain data acquisition and processing, and outline a multi-level governance framework. This framework is aimed at maximizing the benefts of facilitated brain data collection and further processing for science and medicine whilst minimizing risks and preventing harmful use. The framework consists of four primary areas of regulatory intervention : binding regulation, ethics and soft law, responsible innovation, and human rights

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