A/HRC/43/41 that bioethical analyses are often used to give an ethical justification to a new form of eugenics, often referred to as “liberal” eugenics. 13 Contrary to the eugenics movement, liberal eugenics aims to expand reproductive choices for individuals, including the possibility of genetic enhancement. While there may be no State-sponsored coercive eugenics programmes, in a context of widespread prejudice and discrimination against persons with disabilities, the aggregate effect of many individual choices are likely to produce eugenic outcomes. Indeed, ableist social norms and market pressures make it imperative to have the “best possible child” with the best possible chances at life. Some utilitarian bioethicists have further argued that genetic enhancement is a moral obligation and that it is ethical to give parents the option to euthanize their newborns with disabilities.14 22. Emerging technologies raise important bioethical questions that it is increasingly urgent to answer. Advances in biotechnologies, such as gene therapy, genetic engineering, synthetic biology and nanotechnology, raise significant ethical issues concerning the nature, safety and appropriateness of such technologies, as well as their impact on the lives of persons with disabilities. These cutting-edge tools grant humanity unprecedented power to prevent and “repair” disability. There is a genuine concern that the result will not only be an increase in eugenic practices, but an overall decrease in social acceptance and solidarity in relation to diversity and difference. 15 Besides these new challenges linked to emerging technologies, many practices that have been legitimized by traditional bioethics (i.e. coercive interventions) are still problematic from a disability perspective. 23. An existential worry lies beneath these concerns about bioethics and eugenics. When bioethics addresses the moral permissibility of using a particular medical or biological intervention to prevent or treat disability, it is also judging the quality of life and, ultimately, the value of persons with disabilities. What is being debated is the impact of an impairment on an individual’s lived experience against the ethical cost, and sometimes the economic cost, of making a particular intervention or not. Choosing between subjective measures of quality of life (what people with lived experience say) or objective measures (what economists, public health specialists or others say) will lead to different conclusions. As a consequence, when debating those issues, disability rights advocates often feel forced to justify their own worth and existence. That is a feeling shared by many persons with disabilities throughout their lives, while facing stereotyped assumptions about their individual abilities and rights to participate in and contribute to society. 24. The increased reliance on medical practice and policymaking by the work of bioethics committees is also of concern. Such committees systematically and continually address the ethical dimensions of the health sciences, the life sciences and health policies, issuing opinions and recommendations that play an important role in clinical practice, research and policy. However, as some have pointed out, persons with disabilities are not represented on those committees and their views are regularly dismissed. 16 Furthermore, the increasing proceduralism in bioethics, as practised by bioethical committees, is transforming ethics into an “instrumental function” rather than a process of critical reflection.17 As such, ethical debates are reduced to an application of rules to situations in an oversimplified and legalistic manner, without a critical reflection of the role of human rights in bioethics and the power dynamics under which decisions are made. 13 14 15 16 17 6 See Robert Sparrow, “A not-so-new eugenics. Harris and Savulescu on human enhancement”, Hastings Center Report, vol. 41, No. 1 (January-February 2011); and Nicholas Agar, Liberal Eugenics. In Defence of Human Enhancement (Oxford, Blackwell, 2004). See Julian Savulescu, “Procreative beneficence: why we should select the best children”, Bioethics, vol. 15, No. 5–6; and Peter Singer, Practical Ethics, 2nd ed. (New York, Cambridge University Press, 1993). See Nuffield Council on Bioethics, “Genome editing and human reproduction: social and ethical issues”, (July 2018). See Christopher Newell, “Disability, bioethics, and rejected knowledge”, Journal of Medicine and Philosophy, vol. 31, No. 3 (2006). Ibid.