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

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18 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), [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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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.",

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note = "Funding Information: Open Access funding enabled and organized by Projekt DEAL. This consensus paper was developed within the scope of a workshop funded by the Brocher Foundation which took place in Hermance, Switzerland, on November 25–27, 2019. The consensus development process involved a series of group activities including interactive panels, expert groups, and plenary sessions. Author Ricardo Chavarriaga acknowledges the support of the Digitalization Initiative of the Zurich Higher Education Institutions (DIZH) and the Polymath Fellowship program of the Geneva Center for Security Policy. Author Marcello Ienca has been supported in part by the ERA-NET NEURON project HYBRIDMIND (Swiss National Science Foundation 32NE30_199436). The work of author Philipp Kellmeyer was partially supported by a grant (00.001.2019) from the Klaus Tschira Foundation, Germany. Publisher Copyright: {\textcopyright} 2022, The Author(s).",

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AU - Jox, Ralf J.

AU - Jotterand, Fabrice

AU - Voeneky, Silja

AU - Andorno, Roberto

AU - Ball, Tonio

AU - Castelluccia, Claude

AU - Chavarriaga, Ricardo

AU - Chneiweiss, Hervé

AU - Ferretti, Agata

AU - Friedrich, Orsolya

AU - Hurst, Samia

AU - Merkel, Grischa

AU - Molnár-Gábor, Fruzsina

AU - Rickli, Jean Marc

AU - Scheibner, James

AU - Vayena, Effy

AU - Yuste, Rafael

AU - Kellmeyer, Philipp

N1 - Funding Information: Open Access funding enabled and organized by Projekt DEAL. This consensus paper was developed within the scope of a workshop funded by the Brocher Foundation which took place in Hermance, Switzerland, on November 25–27, 2019. The consensus development process involved a series of group activities including interactive panels, expert groups, and plenary sessions. Author Ricardo Chavarriaga acknowledges the support of the Digitalization Initiative of the Zurich Higher Education Institutions (DIZH) and the Polymath Fellowship program of the Geneva Center for Security Policy. Author Marcello Ienca has been supported in part by the ERA-NET NEURON project HYBRIDMIND (Swiss National Science Foundation 32NE30_199436). The work of author Philipp Kellmeyer was partially supported by a grant (00.001.2019) from the Klaus Tschira Foundation, Germany. Publisher Copyright: © 2022, The Author(s).

PY - 2022/7

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Towards a Governance Framework for Brain Data

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Keywords

ASJC Scopus subject areas

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