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

College of Business, Government and Law

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

43 Citations (Scopus)

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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.

Original language	English
Article number	20
Number of pages	14
Journal	Neuroethics
Volume	15
Issue number	2
DOIs	https://doi.org/10.1007/s12152-022-09498-8
Publication status	Published - Jul 2022

Keywords

Brain data
Data governance
Neurodata
Neurotechnology
Regulation

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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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

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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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doi = "10.1007/s12152-022-09498-8",

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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, J-M, 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

TY - JOUR

T1 - Towards a Governance Framework for Brain Data

AU - Ienca, Marcello

AU - Fins, Joseph J.

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

PY - 2022/7

Y1 - 2022/7

N2 - 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.

AB - 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.

KW - Brain data

KW - Data governance

KW - Neurodata

KW - Neurotechnology

KW - Regulation

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U2 - 10.1007/s12152-022-09498-8

DO - 10.1007/s12152-022-09498-8

M3 - Article

SN - 1874-5504

VL - 15

JO - Neuroethics

JF - Neuroethics

IS - 2

M1 - 20

ER -

Towards a Governance Framework for Brain Data

Abstract

Keywords

UN SDGs

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