ESHG warns against misuses of genetic tests and biobanks for discrimination purposes

Forzano, Francesca; Genuardi, Maurizio; Moreau, Yves

doi:10.1038/s41431-020-00786-6

Cited by 21 publications

(12 citation statements)

References 3 publications

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“…In this context, national DNA forensic databases for profiling and crime investigation purposes have grown exponentially in the last 20 years (See for G7 countries in Table 1 ). This specific challenge led the ESHG in 2021 to issue a warning against the misuse of genetic tests and biobanks for discrimination purposes against ethnic minorities [ 10 ]. Yet, the debate is complex as some uses of genetic data for law enforcement, for example, to facilitate the identification of dangerous criminals, can contribute to important public good objectives.…”

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confidence: 99%

Genetic discrimination still casts a large shadow in 2022

Joly

Dalpé

2022

Eur J Hum Genet

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confidence: 99%

Genetic discrimination still casts a large shadow in 2022

Joly

Dalpé

2022

Eur J Hum Genet

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“…Subsequently, this article highlights the progress of GD policies and the identified GD policy gaps to provide interpretations specific to the Asian context, before providing further comparisons with their European and North American counterparts. An emerging area of concern that we decided not to include in our manuscript is that of GD caused by the forensic use of genetic information and databases in Asia 19 . Because this type of use of genetic information does not create GD per se, but rather exacerbate existing types of discrimination based on other factors such as population group, citizenship status, wealth level, etc., it warrants a distinct investigation in future research.…”

Section: Methodsmentioning

confidence: 99%

Genetic discrimination: introducing the Asian perspective to the debate

Kim

et al. 2021

npj Genom. Med.

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Our article aims to provide a comprehensive portrayal of how seven Asian jurisdictions have sought to address the challenge of genetic discrimination (GD) by presenting an analysis of the relevant legislation, policies, and practices. Based on our findings, policy discussion and action on preventing or mitigating GD have been narrowly framed in terms of employment, insurance, disability, marriage, and family planning. Except for South Korea, none of the jurisdictions we examined has adopted specific legislation to prevent GD. However, for Asia to truly benefit from its recent scientific and technological progress in genomics, we highlight the need for these jurisdictions to engage more proactively with the challenges of GD through a coordinated regulatory and governance mechanism.

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“…There are relatively clear ethical frameworks governing genetics and genomics research in biomedicine that emphasise the responsibility of the researcher to research participants and to society. Strict adherence to them is vital in order to avoid public and policy backlashes, such as those seen over unethical human genome editing experiments in China and Mexico [ 22 , 23 ], and non-consensual collection of DNA materials and data from minorities in China and Europe [ 24 , 25 ]. While this shows that ethical conduct within biomedical genetics research can also still be erratic, the data collection from minorities and marginalised communities, in particular, has recently required focussed attention within forensic genetics research.…”

Section: Why An Ethos For Forensic Genetics?mentioning

confidence: 99%

Integrity, Trustworthiness, and Effectiveness: Towards an Ethos for Forensic Genetics

Wienroth

Amankwaa

McCartney

2022

Genes

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Forensic genetics comes under critical scrutiny when developments challenge previously accepted legal, ethical, social, and other boundaries. Forensic geneticists continue to build a knowledge culture within a community of practice that acknowledges ethical standards of conduct in both research and the societal application of forensic genetics. As the community further cements and extends its societal role, and in that process often pushing at ethical and legal boundaries, it requires a strong, resilient, and responsive ethos that, in setting clear parameters for conduct, fosters the field’s sense of purpose. While supra-national declarations and human rights protections, coupled with local regulations, provide some parameters for practice, and discipline-specific guidance has refined an agenda for forensic genetics research and application, this maturing field needs to now define its core principles. This contribution proposes the values of integrity, trustworthiness, and effectiveness as a foundational triptych for a bespoke forensic genetics ethos to ensure the augmentation of developments that range from a purely science-oriented to a wider societally relevant knowledge culture.

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ESHG warns against misuses of genetic tests and biobanks for discrimination purposes

Cited by 21 publications

References 3 publications

Genetic discrimination still casts a large shadow in 2022

Genetic discrimination still casts a large shadow in 2022

Genetic discrimination: introducing the Asian perspective to the debate

Integrity, Trustworthiness, and Effectiveness: Towards an Ethos for Forensic Genetics

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