A/HRC/43/41 IV. Bioethics and disability 16. Ableist positions continue to dominate important debates that impact on the rights of persons with disabilities. Outdated notions about normality still dominate medical, legal and philosophical deliberations, including sensitive discussions related to scientific and medical developments and practice, such as prenatal screening; gene editing; withholding and withdrawal of life-sustaining treatments; the permissibility of invasive, painful and/or irreversible interventions; and assisted dying. Often, these debates have taken place primarily in the field of bioethics. 17. Bioethics is a broad interdisciplinary field in which ethical issues raised by developments in medicine and biology are explored, studied and resolved. It draws from a wide range of subjects, including philosophy, law, social science, social policy and medicine, applying a variety of theoretical and empirical approaches. 11 Although much of bioethics is academic, it helps to address very practical issues ranging from clinical decisions to public health innovations and social policy and contributing to judging whether an intervention is ethically right and how research and practice should be regulated. Furthermore, bioethics is concerned with the ethical consequences of the ways that advances in medicine and biology impact upon how societies consider human lives and values. It reflects on the modern dilemma between individual liberty and social responsibility. 18. Bioethics emerged in part in response to the brutalities that took place in the Second World War, in order to protect the human dignity and human rights of all by addressing the power and morality of scientific and technological developments. 12 Anchored in the indivisibility of ethics and human rights, as reflected in the Nuremberg Code and the Universal Declaration of Human Rights, the relationship between bioethics and human rights was later strengthened by the Declaration of Helsinki (1964), the International Covenants on Civil and Political Rights and on Economic, Social and Cultural Rights (1966), the Universal Declaration on the Human Genome and Human Rights (1997), the International Declaration on Human Genetic Data (2003) and the Universal Declaration on Bioethics and Human Rights (2005). At the regional level, only the Council of Europe has a specific treaty on the issue, the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (Oviedo Convention) (1997). 19. Historically, bioethics and disability have had a close but conflictual relationship. Despite a common interest in facilitating good medical care and individual choice, disability rights activists and bioethicists often differ considerably in their approaches. From a mainstream bioethical perspective, preventing or curing impairments is a morally good thing to do. Since disability is perceived as a deviation from a norm of health, restoring impaired bodies and minds to normal functioning and health, or ideally preventing such an occurrence, is valued positively. However, from a disability rights perspective, disability is part of the continuum of the human experience. The question is not about preventing or curing impairments, but how to ensure that all persons with disabilities enjoy the same rights and opportunities as everybody else. 20. Much of the work in bioethics to date has been based on a thin or inaccurate understanding of the diversity, complexity, and socially embedded nature of disability. While some bioethical writing on disability has begun to take into account the perspective of persons with disabilities, it is still overwhelmingly produced from the standpoint of outsiders. Ableist views, including the assumption that persons with disabilities are of lesser value than others, or that their lives are not worth living, dictate most bioethical discussions, from prenatal testing to assisted dying. They therefore fail to address the bioethical questions that actually concern persons with disabilities and their families. 21. When discussing issues such as prenatal testing, selective abortion and preimplantation genetic diagnosis, there is a shared concern among disability rights activists 11 12 Alicia Ouellette, Bioethics and Disability. Towards a Disability-Conscious Bioethics (New York, Cambridge University Press, 2011). See Paula Siverino Bavio, “Una bioética en clave latinoamericana: aportes de la Declaración Universal sobre bioética y derechos humanos de UNESCO”, Derecho PUCP, vol. 63 (2009). 5