Human Genetic Manipulation and the Right to Identity: The Contradictions of Human Rights Law in Regulating the Human Genome

Abstract

This paper analyses an overlooked tension between the right to personal identity and the collective right to human identity in the context of human rights law as it applies to prospective human genetic modification. While the right to personal identity may justify a valid interest in the modification of one’s individual genome, the collective right to identity defends a global interest in the preservation of the human genome. Taking this tension into account, the article identifies a number of contradictions and problematic issues in the current international legal regulation of the human genome that undermine the right to personal identity. These are the cases of the notion of the human genome as common heritage of humanity and the unfounded idea of species integrity, among others. The article also argues that the Universal Declaration on the Human Genome and Human Rights (UDHGHR) and the Oviedo Convention, together with the UNESCO Bioethics Committee, adopt a “geneticist-identity framework” which favours a conception of human identity solely based on genetic components. By prohibiting any change to the constitution of that shared genetic inheritance, those international legal instruments place an unjustified brake on the possibility for human genetic modification. This, as the article explains, is at odds with the “personality-identity framework” of the European Convention on Human Rights Law (ECHR), which privileges a narrative and developmental idea of individual identity.