Abstract

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.

Highlights

  • Julian Savulescu’s Principle of Procreative Beneficence (2001) had been one of the most discussed and criticised bioethical principles over the last 20 years To briefly recap, the principle applies to the moral decisions of prospective parents in the context of in vitro fertilisation (IVF) procedures

  • One important outcome of this criticism is a greater moral acceptance of people who are deaf genetically selecting to have a deaf child. 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

  • Insofar as one considers the presence of person-affecting harm to be morally important, we argue that 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 preexisting embryos of future children

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Summary

Introduction

Julian Savulescu’s Principle of Procreative Beneficence (2001) had been one of the most discussed and criticised bioethical principles over the last 20 years (more recent versions can be seen in Savulescu and Kahane, 2009 and Savulescu and Kahane et al, 2017) To briefly recap, the principle applies to the moral decisions of prospective parents in the context of in vitro fertilisation (IVF) procedures. The significance of a genome editing context The gene editing route can be distinguished from genetic selection in that the former is, roughly, making particular genetic changes to the given embryo and the latter is the selection of different embryos entirely Some, such as Ranisch (2020), would view the distinction ( attributing additional moral weight to person-affecting considerations) to raise as many counter-intuitive implications as it would resolve. Martin Harvey (2004) argues that, the genetic augmentation route does not offer a hard and fast distinction from selection in terms of being a case of harming the resulting child, it offers a certain context where the ‘no (person-affecting) harm’ issue fails to apply.

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