Gene editing and disabled people: a response to Felicity Boardman

Beriain, Íñigo de Miguel

doi:10.1007/s12687-020-00460-w

J Community Genet

2020

DOI: 10.1007/s12687-020-00460-w

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Gene editing and disabled people: a response to Felicity Boardman

Íñigo de Miguel Beriain

Abstract: Is the germline gene editing (GEE) of embryos with disabling conditions a moral obligation? According to a recent editorial by F. Broadmann, there are strong reasons to hold the opposite, since "such a focus on the benefit to individual embryos is to overlook the broader societal changes that genome editing will signal, as well as the potential negative impacts on existing persons with genetic conditions". This paper is aimed at rebuking these arguments by invoking the human dignity principle.

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Cited by 4 publications

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An analysis of different concepts of “identity” in the heritable genome editing debate

Liaw

2024

Med Health Care and Philos

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Human heritable genome editing (HHGE) involves editing the genes of human gametes and/or early human embryos. Whilst ‘identity’ is a key concept underpinning the current HHGE debate, there is a lack of inclusive analysis on different concepts of ‘identity’ which renders the overall debate confusing at times. This paper first contributes to reviewing the existing literature by consolidating how ‘identity’ has been discussed in the HHGE debate. Essentially, the discussion will reveal an ontological and empirical understanding of identity when different types of identity are involved. Here, I discuss genetic, numerical, qualitative and narrative and how each of them is relevant in the HHGE context. Secondly, given the different types of identity, the paper explores how we could navigate these different interpretations of identity in a way that promotes an inclusive and informed discussion between primary stakeholders and the general public in the HHGE debate. Here, I argue for and refine a multi-faceted concept of identity as a suitable framework for discussing the ethical and societal implications of HHGE because it not only could integrate different understandings of identity but also highlight the interconnectedness between these different understandings.

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An analysis of different concepts of “identity” in the heritable genome editing debate

Liaw

2024

Med Health Care and Philos

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Letter to the editor. Gene editing and disabled people: a response to Iñigo de Miguel Beriain

Boardman

2020

J Community Genet

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Genome editing and ‘disenhancement’: Considerations on issues of non-identity and genetic pluralism

Feeney

Rakić

2021

Humanit Soc Sci Commun

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In the decade prior to CRISPR-Cas9, Michael Parker criticised Julian Savulescu’s Procreative Beneficence (PB) Principle by arguing against the confidence to know what’s best in terms of genetic traits for our offspring. One important outcome of this criticism was a greater moral acceptance of deaf people genetically selecting deaf children. Although this outcome may have been morally controversial in an impersonal harm context, in such genetic selection (PGD) cases, a deaf child is not harmed in person-affecting terms because no other life is available to that child. We highlight that the person-affecting versus impersonal harm distinction is still held by many as making a significant moral difference to their overall argument (i.e. Savulescu, Parker, Boardman, De Miguel Beriain) and so for the purposes of this paper, we will assume it makes ‘some difference’ (even if only at the level of the message it sends out). Insofar as one considers the presence person-affecting harm to be morally important (and to whatever extent), the impersonal harm context in which the Parker–Savulescu debate arose thereby blunts an arguably even more radical outcome—that of genetically engineering, or gene editing, deafness into pre-existing embryos of future children. Now, the potential of CRISPR-Cas9 has revitalised such debates by reframing impersonal and person-affecting benefits/harms in the context of such disputes on the harm or not of a (chosen) disability. Replacing the genetic selection context with a genome editing context, we argue that Parker’s argument should also deem it morally acceptable for people who are deaf to genetically edit embryos to become children who are also deaf. Felicity Boardman’s recent comments suggest a similar radical potential as Parker’s, with the radicalness also blunted by an impersonal context (a context that Boardman, at least, sees as significant). We conclude that the genome editing reframing will push such arguments beyond what were originally intended, and this will create a more radical message that may help further define the relationship between new genomic technologies and disability.

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Gene editing and disabled people: a response to Felicity Boardman

Cited by 4 publications

References 14 publications

An analysis of different concepts of “identity” in the heritable genome editing debate

An analysis of different concepts of “identity” in the heritable genome editing debate

Letter to the editor. Gene editing and disabled people: a response to Iñigo de Miguel Beriain

Genome editing and ‘disenhancement’: Considerations on issues of non-identity and genetic pluralism

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