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

摘要

The response of disabled people to the possibility of human germline genome editing (HGGE) is an important topic, and one recently presented in an article by Kleiderman and Kellner Stedman ( 2020 ). The need to engage directly with members of the disability and rare disease community on such developments in genomic medicine was further underscored by my recent editorial (Boardman 2020 ), within which I highlighted the role of identity politics in informing reactions to HGGE amongst such groups who live directly with genetic conditions. Writing in reaction to this editorial, I?igo De Miguel Beriain ( 2020 ) has defended the use of HGGE against some of the critiques levelled by disability rights supporters that I outlined, by appealing to the principle of human dignity. He does this through the use of two key points: That life without a disability should be regarded as preferable to one with a disability. That if we were to accept that it is in the best interests of wider society to retain disability as a trait in its members, that ‘forcing people to suffer’ (De Miguel Beriain 2020 ) with disabilities to meet this end is unethical, because this would mean that the ‘welfare of human beings [would] be sacrificed for the good of the collective’, which, he argues, is not in keeping with the principle of human dignity. I would like to respond to De Miguel Beriain’s arguments by firstly highlighting the erroneous assumptions inherent in his first point, before showing how the second no longer stands once the first is refuted. The argument that life without disability must surely be preferable to one with disability is not new, and one certainly that is largely upheld within the beliefs and reproductive practices of wider society. However, I dispute the claim, made directly by De Miguel Beriain, that the inferiority of life with disability to one without it is ‘an acceptable conclusion for everyone’ (De Miguel Beriain 2020 ). There are numerous examples of people with genetic conditions who not only readily accept a child with the same condition as themselves (Henley 2016 ; Black 2016 ; Lancaster 2011 ) but also sometimes actively seek it (Teather 2002 ; Shanghavi 2006 ). A study by Baruch and colleagues, for example, found that 3% of the 137 IVF centres they surveyed in the USA had used PGD to actively select for the disabling trait of the parents (Baruch et al. 2008 ). For some would-be parents, there are practical considerations (e.g. linguistic, environmental) that inform a decision to select for disability, or, at least, refrain from preventing it (Shanghavi 2006 ). Yet for others, the decision stems from a fundamental conviction that life with a disabling condition is intrinsically of no less value than a life without it (Wallis 2019 ). As such, the physical, financial and psychological risks associated with technologically mediated reproduction are not justified. In his response, De Miguel Beriain ( 2020 ) does acknowledge, however, that there are some disabled people who are reluctant to accept treatments for their condition, and as such may not welcome HGGE technologies. This group of people he refers to as ‘type A patients’, in contrast to ‘type B patients’, a category he reserves for those disabled people who would prefer removal of their condition. Sticking with this taxonomy, I accept De Miguel Beriain’s statement that it is difficult—if not impossible–to prenatally predict which response (type A or type B) a would-be-disabled embryo will adopt to their condition. Experience of genetic disability is always mediated by social, cultural and environmental factors, healthcare availability and access, and psychological differences between individuals—factors that cannot be pre-determined by a genetic test. Despite this complexity, however, research is increasingly demonstrating that there are a range of factors that make a ‘type A’ response to disablement more likely. Amongst which, early/congenital onset is a significant factor (Bogart 2014 , 2019 ; Hahn and Belt 2004 ; Shakespeare 2006 ; Boardman et al. 2017 ; Jamoom et al. 2008 ). People who are born with their disability are more likely to have incorporated their condition into their identity and sense of self, and to have set their lives up around its existence than those who firstly experience able-bodiedness before becoming disabled. People with later onset disabilities typically undergo significant (and sometimes recurrent) identity negotiations and life re-structuring as they adapt to their disability, which may involve varying degrees of loss (Shakespeare 2006 ). It is these people who are much more likely to externalise their disability and separate it from their sense of self (Watson 2002 ). Such individuals are therefore more likely to view their condition as an unwelcome intrusion in their lives and to desire its eradication. These individuals are therefore far more likely to fall into the ‘type B’ category that De Miguel Beriain ( 2020 ) had