Disability by Design?

What is meant by ‘disability’ is subject for considerable debate, as little agreement exists on how the concept ought to be defined. Moral intuitions about disability in ‘ableist’ societies suggest that having a disability is something undesirable, as being disabled significantly reduces the individual’s quality of life* and social opportunities (Note: I am not aware, at this time, of experimental research which has explored the moral intuitions regarding disability. Perhaps an interesting area of exploration for the X-Phi folk…).

Progress in reproductive genetic biotechnology, such as preimplantation genetic diagnosis (PGD), has made it possible for prospective parents to select against particular genetic traits causing disability or disease in the offspring. For example, a parent who is a carrier of dominant mutations on HTT – the Huntington’s gene – and does not want to pass down an affected gene to his or her progeny can use PGD in tandem with other approaches such as in-vitro fertilization (IVF) to increase the likelihood that unaffected embryos are the only embryos implanted back into the woman’s uterus. Potential use of the biotechnology to intentionally select against ‘negative’ traits (such as future disability) or select for ‘positive’ non-medical traits (e.g., gender, eye or hair colour, height, intelligence), has caused outcry from slippery-slope skeptics concerning  fears over “designer babies” and “the new eugenics.” Although these arguments are worthy of reflection and consideration, I won’t attend to them in this post.

A perhaps unforeseen outcome of biotechnologies such as PGD is its intentional use in deliberately selecting embryos for genetic traits resulting in the presence of what many would consider a disability. This counter-intuitive and controversial suggestion has surfaced in recent years in light of deaf parents who desire a child who is deaf like them (i.e., will have non-syndromic, autosomal recessive deafness). Proponents of this view argue that deafness is not a disability, but rather a particular condition that permits inclusion in a vibrant community with a rich culture united by sign language. Although supporters acknowledge that being deaf has certain disadvantages, they assert that these disadvantages are products of stigma, discrimination, and the social construction of disability, not inherent to deafness itself. One particular position, known as the expressivist argument, opposes deliberately selecting against genetic traits that lead to a disability. In this view, selecting against a future child on the basis of a disability indicates that the particular genetic trait is so undesirable that it overshadows all other possible traits. Some authors, such as John Harris and Walter Glannon, argue that intentionally selecting for disability in one’s selfish interest is a case of moral harm, as one has a duty to avoid preventable pain and suffering in those who are brought into existence; by intentionally bringing a child into the world who has a disability, it significantly violates the child’s right to an open future. Alternative perspectives proposed by scholars such as Julian Savulescu, argue against a procreative liberty and argue for a “procreative beneficence,” specifically that humans have a moral duty to “select the best children” (i.e., children with the most ‘desirable’ traits). Advocates of the aforementioned positions assert that although they value the existence of living disabled individuals and that these individuals deserve equal respect as any other human being, it is morally wrong to knowingly bring a disabled child into the world.

A similar biosocial group to Deaf culture has emerged in the Autism Spectrum Disorder (ASD) community through an advocacy movement called Neurodiversity. Neurodiversity activists argue that ASD – and Asperger syndrome in particular – is not a disease to be treated or cured, but rather a human variation like gender, race, or sexual orientation, that deserves respect. Individuals who identify as neurodiverse state they their brains are ‘wired’ in a diverse, but not pathological, manner (those who are not Neurodiverse are considered ‘neurotypical’). A recent paper by Pat Walsh in the Journal of Medical Ethics has opened the  reproductive ethics debate to include ASD and challenge “the supposed obligation not to bring disabled lives into the world” (Note: it is currently not possible to intentionally select for ASD through PGD). Taking particular issue with John Harris’ absolutist position on this issue, Walsh rejects Harris’ stance and instead argues that ASD should be seen as having a strong claim to be exempt from such an obligation. This is because of the “dual nature” of ASD, that is, while these individuals may have difficulties negotiating the social world and possess other traits that might be regarded as disabling, some individuals with ASD tend to be intellectually gifted and others even possess savant-like qualities. Indeed, Ludwig Wittgenstein, arguably one of the most influential philosophers of the 20th century, was believed to have had Asperger syndrome. Since Wittgenstein’s (and others) intellectual giftedness is inseparable from other traits causing disability, then obliging to not bring such individuals into the world would be a loss to society as a whole. This latter dilemma is what Gillett refers to as the unwitting sacrifice problem: the ethical challenges that arise when selecting for disabilities that can cause suffering in the individual, but can also be advantageous to both individuals and society. Gillett notices that, in selecting for disability, these individuals are born as unwitting sacrifices to society’s or parent’s desire for certain genetic traits that are deemed valuable. Ought we permit somebody to be an unwitting sacrifice? In order to fully answer this question, however, we need to determine whether conditions such as ASD carry enough suffering that intentionally selecting for these conditions would be unjust.

*Regarding the QoL question, there have been some elegant qualitative studies which demonstrate that people living with serious and long-term disabilities actually report a high-level QoL. See, e.g., Albrecht and Devlieger (1999).

References

Image Source: MySpace

Dennis, C. (2004). Deaf by design. Nature, 431, 895-896.

Fenton, A., and Krahn, T. (2007). Autism, neurodiversity, and equality beyond the ‘normal’. Journal of Ethics in Mental Health, 2(2). http://www.jemh.ca.

Gillett, G. (2005). The unwitting sacrifice problem. Journal of Medical Ethics, 31(6), 327-332.

Glannon, W. (1998). Genes, embryos, and future people. Bioethics, 12(3), 187-211.

Glannon, W. (2007). Neurodiversity. Journal of Ethics in Mental Health, 2(2). http://www.jemh.ca.

Harris, J. (2000). Is there a coherent social conception of disability? Journal of Medical Ethics, 26, 95-100.

Ho, A. (2008). The individualist model of autonomy and the challenge of disability. Journal of Bioethical Inquiry, 5, 193-207.

Lane, H. (1995). Constructions of deafness. Disability & Society, 10(2), 171-190.

Levy, N. (2002). Deafness, culture, and choice. Journal of Medical Ethics, 28(5), 284-285.

Parens, E., and Asch, A. (2003). Disability rights critique of prenatal genetic testing: Reflections and recommendations. Mental Retardation and Developmental Disabilities Research Reviews 9(1), 40-47.

Savulescu, J. (2001). Procreative beneficence: Why we should select the best children. Bioethics 15(5), 413-426.

Walsh, P. (2010). Asperger syndrome and the supposed obligation not to bring disabled lives into the world. Journal of Medical Ethics, 36, 521-524.

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4 thoughts on “Disability by Design?

  1. Pingback: Disability by Design? « Neuroethics at the Core « Better Disability

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  3. I would like to see some X-phi studies regarding the Qol question; perhaps to examine the potential (or lack thereof) for achieving “the Good life” in such cases. While the notion of the ‘ableist’ society may be sickeningly accurate, designing disability is a step too far (a definite slippery slope). Our society can and should benefit from perceiving disability in a different way; acknowledging its’ intrinsic quality of uniqueness. However, this is not to say a baby with such disabilities should be knowingly brought into the world. Regardless of the fact that every person should view every other person as an equal no matter what their differences, it is an undeniable fact that individuals with such disabilities will not have the same amount of opportunities as those without.

  4. Pingback: “Designer Babies,” How Should We Design the Future? | Girls Chase Boys

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