Does therapeutic human germline editing discriminate against persons with disability? : an analysis of the potential for discrimination through ableism

Abstract

Rapid biotechnological advancements in human genetic engineering are presenting opportunities which can reshape humanity as we know it in ways which cannot yet be fully predicted. The powerful potential of this practice unquestionably raises concerns as to its effects, not only on individuals making use of it but also on groups and society in general. This research explores therapeutic human germline editing and arising concerns through its potential for discrimination against existent persons with disability in society. It explores discrimination specifically through the concept of ableism which may be understood to be at the basis of a medicalisation of disability through germline editing. This is legally significant in preventing disability discrimination which violates international human rights laws. As a matter of fact, to explore these potential implications, this research refers to the principle of non-discrimination based on disability under international human rights law, in particular the Convention on the Rights of Persons with Disabilities (UNCRPD). It considers this in relation to respect to human dignity, the fundamental equality and unity of humanity, and the prohibition of genetic reductionism, at the basis of the Universal Declaration on the Human Genome and Human Rights (UDHGHR) and the Convention of Biomedicine and Human Rights (Oviedo Convention), inspired and based on the EU Charter of Fundamental Rights (CFR). This research also refers to the different narratives which the understanding of disability can take, namely social or medical, in order to apprehend the potential ableist effects of a medicalised approach to disability which the objective of human germline editing may underlie. This research ultimately proves how there is potential for discrimination against persons with disability through an ableist message underlying therapeutic human germline editing, but is not automatic or inevitable. To that end, this thesis explores the role which regulation of this practice has in preventing the materialisation of such potential, basing it on the rationale of the mechanism of justifiable discrimination developed by jurisprudence.