A/HRC/43/41 25. Against that background, there is a need to return to a bioethics informed by human rights. Bioethics should move toward a “disability bioethics”18 or a “disability-conscious bioethics” 19 that recognizes the rights and concerns of persons with disabilities, paying close attention to their own voices, their needs and their ethical choices. To have a reliable basis for theoretical ethical reflection and policymaking, bioethics must have enough empirical grounding in the realities of the lives of persons with disabilities. The bioethical debate must be permeated by the human rights standards and concerns related to persons with disabilities. While bioethics has a commitment to promote respect for human dignity and protect human rights (Universal Declaration on Bioethics and Human Rights, art. 2), the rights of persons with disabilities, as informed by the Convention on the Rights of Persons with Disabilities, are yet to be embraced. V. Contemporary challenges 26. There is a permanent tension between the notion of “curing disability” and that of supporting people to live with a disability. Persons with disabilities themselves have different perspectives on the issue. Some may find the notion of cure irrelevant or even offensive, particularly those who experience disability as part of their identity; whereas others are supportive of biomedical research aimed at curing or correcting impairments. Both views are equally valid and must be respected. Nevertheless, society biases towards “fixing” difference have a broad range of negative consequences for persons with disabilities. 27. While prevention of impairments and illnesses is an important element of public health policy, it is not an appropriate tool for protecting the rights or improving the quality of life of persons with disabilities, in particular when State efforts are focused on prevention instead of on fixing society to be accessible to, and inclusive of, persons with disabilities. Furthermore, many prevention programmes reinforce prejudice and stigma against persons with disabilities by conveying the message that life with a disability is not worth living.20 In addition, biomedical research targeting certain conditions, such as autism, raises the important question as to whether prevention of such conditions is desirable, as it will result in a reduction of human diversity. 28. Many parents of children with disabilities experience enormous pressure towards cure. There is a growing number of interventions aimed at “fixing” a child’s impairments or, at least, making them less apparent to the outside world. Many of these interventions are invasive, painful and/or irreversible, and do not achieve any real benefit for the children, because they are performed with the sole objective of making them appear aesthetically normal and better accepted within society (for example, limb lengthening in children with restricted growth or cosmetic facial surgery in children with Down’s syndrome). Some interventions are potentially harmful, such as stem cell therapy, antifungal medications and chelation therapy for autistic children. 21 There are also a number of surgical procedures and hormonal treatments intended to inhibit the growth of children with severe impairments, including hysterectomy and oestrogen treatment (see A/72/133). 29. Ableist views of disability also lead to coercive practices. While autonomy is a central value of bioethics, many groups of persons with disabilities, such as persons with intellectual disabilities, persons with psychosocial disabilities, persons with dementia and autistic persons, are regularly considered as “incompetent” to consent to treatment and are therefore subjected to forced and/or involuntary medical interventions, research and experimentation aimed at curing or correcting their impairments (and its consequences). These practices include, inter alia, sterilization, contraception and abortion; invasive, 18 19 20 21 See Jackie Leach Scully, Disability Bioethics: Moral Bodies, Moral Difference (Lanham, Maryland, Rowman and Littlefield, 2008). See Alicia Ouellette, Bioethics and Disability. Towards a Disability-Conscious Bioethics. See Theresia Degener, “Disability in a human rights context”, Laws, vol. 5, No. 3 (2016). See Susan E. Levy and Susan L. Hyman, “Complementary and alternative medicine treatments for children with autism spectrum disorders”, Child and Adolescent Psychiatric Clinics of North America, vol. 24, No. 1 (2015). 7