Towards a Governance Framework for Brain Data

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

doi:10.1007/s12152-022-09498-8

Towards a Governance Framework for Brain Data

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

Research output: Contribution to journal › Article › peer-review

35 Scopus citations

Abstract

The increasing availability of brain data within and outside the biomedical field, combined with the application of artificial 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 benefits 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.

Original language	English (US)
Article number	20
Journal	Neuroethics
Volume	15
Issue number	2
DOIs	https://doi.org/10.1007/s12152-022-09498-8
State	Published - Jul 2022

Keywords

Brain data
Data governance
Neurodata
Neurotechnology
Regulation

ASJC Scopus subject areas

Philosophy
Neurology
Health Policy
Psychiatry and Mental health

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Ienca, M., Fins, J. J., Jox, R. J., Jotterand, F., Voeneky, S., Andorno, R., Ball, T., Castelluccia, C., Chavarriaga, R., Chneiweiss, H., Ferretti, A., Friedrich, O., Hurst, S., Merkel, G., Molnár-Gábor, F., Rickli, J. M., Scheibner, J., Vayena, E., Yuste, R., & Kellmeyer, P. (2022). Towards a Governance Framework for Brain Data. Neuroethics, 15(2), Article 20. https://doi.org/10.1007/s12152-022-09498-8

Ienca, M, Fins, JJ, Jox, RJ, Jotterand, F, Voeneky, S, Andorno, R, Ball, T, Castelluccia, C, Chavarriaga, R, Chneiweiss, H, Ferretti, A, Friedrich, O, Hurst, S, Merkel, G, Molnár-Gábor, F, Rickli, JM, Scheibner, J, Vayena, E, Yuste, R & Kellmeyer, P 2022, 'Towards a Governance Framework for Brain Data', Neuroethics, vol. 15, no. 2, 20. https://doi.org/10.1007/s12152-022-09498-8

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AU - Andorno, Roberto

AU - Ball, Tonio

AU - Castelluccia, Claude

AU - Chavarriaga, Ricardo

AU - Chneiweiss, Hervé

AU - Ferretti, Agata

AU - Friedrich, Orsolya

AU - Hurst, Samia

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AU - Molnár-Gábor, Fruzsina

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Towards a Governance Framework for Brain Data

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