Addressing the ethical and societal challenges posed by genome-wide association studies of behavioral and brain-related traits

Matthieu C. de Hemptinne; Danielle Posthuma

doi:10.1038/s41593-023-01333-4

Addressing the ethical and societal challenges posed by genome-wide association studies of behavioral and brain-related traits

Matthieu C. de Hemptinne
, Danielle Posthuma^*

^*Corresponding author for this work

Research output: Contribution to Journal › Article › Academic › peer-review

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Abstract

Genome-wide association studies have led to the identification of robust statistical associations of genetic variants with numerous brain-related traits, including neurological and psychiatric conditions, and psychological and behavioral measures. These results may provide insight into the biology underlying these traits and may facilitate clinically useful predictions. However, these results also carry the risk of harm, including possible negative effects of inaccurate predictions, violations of privacy, stigma and genomic discrimination, raising serious ethical and legal implications. Here, we discuss ethical concerns surrounding the results of genome-wide association studies for individuals, society and researchers. Given the success of genome-wide association studies and the increasing availability of nonclinical genomic prediction technologies, better laws and guidelines are urgently needed to regulate the storage, processing and responsible use of genetic data. Also, researchers should be aware of possible misuse of their results, and we provide guidance to help avoid such negative impacts on individuals and society.

Original language	English
Pages (from-to)	932-941
Number of pages	10
Journal	Nature neuroscience
Volume	26
Issue number	6
Early online date	22 May 2023
DOIs	https://doi.org/10.1038/s41593-023-01333-4
Publication status	Published - Jun 2023

Bibliographical note

Funding Information:
This work is supported by the Netherlands Organization for Scientific Research—Gravitation project ‘BRAINSCAPES: a Roadmap from Neurogenetics to Neurobiology’ (024.004.012) and the European Research Council advanced grant ‘From GWAS to Function’ (ERC-2018-ADG 834057). We thank E. Uffelmann and P. Jansen for critical reading and fruitful discussions on earlier versions of this paper, and E. Bunnik for critically reading a pre-final version from a bioethical point of view.

Publisher Copyright:
© 2023, Springer Nature America, Inc.

Funding

This work is supported by the Netherlands Organization for Scientific Research—Gravitation project ‘BRAINSCAPES: a Roadmap from Neurogenetics to Neurobiology’ (024.004.012) and the European Research Council advanced grant ‘From GWAS to Function’ (ERC-2018-ADG 834057). We thank E. Uffelmann and P. Jansen for critical reading and fruitful discussions on earlier versions of this paper, and E. Bunnik for critically reading a pre-final version from a bioethical point of view.

Funders	Funder number
European Research Council
Netherlands Organization for Scientific Research	024.004.012
Horizon 2020 Framework Programme	834057

UN SDGs

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

SDG 10 Reduced Inequalities
SDG 16 Peace, Justice and Strong Institutions

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10.1038/s41593-023-01333-4

Addressing the ethical and societal challenges posed by genome-wide association studies of behavioral and brain-related traitsFinal published version, 1.64 MBLicence: Article 25fa Dutch Copyright Act

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abstract = "Genome-wide association studies have led to the identification of robust statistical associations of genetic variants with numerous brain-related traits, including neurological and psychiatric conditions, and psychological and behavioral measures. These results may provide insight into the biology underlying these traits and may facilitate clinically useful predictions. However, these results also carry the risk of harm, including possible negative effects of inaccurate predictions, violations of privacy, stigma and genomic discrimination, raising serious ethical and legal implications. Here, we discuss ethical concerns surrounding the results of genome-wide association studies for individuals, society and researchers. Given the success of genome-wide association studies and the increasing availability of nonclinical genomic prediction technologies, better laws and guidelines are urgently needed to regulate the storage, processing and responsible use of genetic data. Also, researchers should be aware of possible misuse of their results, and we provide guidance to help avoid such negative impacts on individuals and society.",

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Addressing the ethical and societal challenges posed by genome-wide association studies of behavioral and brain-related traits

Abstract

Bibliographical note

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UN SDGs

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