The Impact of Narratives on the Legal and Regulatory Discourse of Heritable Human Genome Editing

Abstract

Since its discovery in 2012, Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) technology in somatic and germline cells has rapidly advanced within a very short timeframe. Notably, Heritable Human Genome Editing (HHGE), which refers to the editing of germline cells for the purpose of reproduction, has significant potential for therapeutic application. This article argues that the framing and expression of ethical considerations as a narrative can guide the establishment of a legal and regulatory approach to HHGE. Its purpose is to demonstrate the role and value of narratives in the ethical and legal permissibility of a frontier technology: CRISPR technology. To achieve this purpose, the article applies narrative theory, specifically through a case study, to support an argument for the ethical and legal sanctioning of HHGE, in certain circumstances. This article has identified one instance in which HHGE ought to be legally permitted: to prevent Tay-Sachs Disease. The argument is framed through the lens of the four key principles of medical ethics: autonomy, non-maleficence, beneficence and justice. To progress as a society and change our circumstances, we must be open to editing the narrative of HHGE as a potential lifesaving treatment for fatal monogenic genetic disease/s. HHGE provides an opportunity to write an exciting new chapter. Although not unaccompanied by risks, our future global society may look back upon this time to learn about the importance of honest and accurate facts underpinning the CRISPR narrative.