Reinterpreting “genetic identity” in the regulatory and ethical context of heritable genome editing

Abstract

Heritable genome editing (HGE) is prohibited by several international conventions for a number of reasons, including the protection of “genetic identity.” This article provides a conceptual analysis of the concept of “genetic identity” and offers normative reflections as to how it should be interpreted in the context of HGE. In particular, this article examines the purported right to retain “genetic identity” and the right-to-know “genetic identity” in order to explore the possible implications of these understandings on the debate concerning HGE on nuclear genome. We argue that a right to retain “genetic identity,” that is a right to an untampered genome, is unlikely to be plausibly established if the current international provisions are used as the basis for governing the use of HGE, due to both conceptual and practical ambiguities. We note that the international framework may be more nuanced if it directly engages with what it means to “preserve humanity.” Furthermore, drawing on the existing literature on identity formation, we argue that “genetic identity” based on a narrative-based understanding of identity should be given more weight in the context of HGE because it better safeguards the interests of the children born via the technology, should the technology be legalized for clinical use.