A child-centred approach in human heritable genome editing

Abstract

The core feature of human heritable genome editing (“HGE”) is that any modification made on the germ cells (sperms or eggs) or early human embryos is likely to be passed down to subsequent generations. This feature makes the use of this technology highly controversial. Thus, there is a need to adopt a suitable approach to consider future children who are going to live the consequences of this technology. Taking a child-centred perspective, this thesis explores two main concerns: first, whether, and to what extent, the act of HGE is ethically acceptable; and second, how should HGE be regulated if it is deemed ethically acceptable for reproductive use. More specifically, it examines how a child-centred approach should be adopted in answering these questions. This thesis first examines four child-related arguments commonly raised in the existing HGE debate, including the non-identity problem, the open future argument, the purported right to non-modified genomes, and the proposed long-term follow up system for the resulting children. It argues that the existing arguments and proposal have failed to appropriately consider (future) children’s interests mainly because there is (1) a lack of solid theoretical framework to justify the recommendation commonly made for a health-related use of HGE, and (2) a lack of detailed analysis on an important but often overlooked concept in the HGE debate, that is the concept of “identity”. In order to fill these gaps, this thesis explores the capability approach and argues that Jennifer Ruger’s health capability paradigm provides a good philosophical framework in understanding why “health capabilities” can justify and more importantly, also limit the health-related use of the technology. Additionally, this thesis analyses the concepts of “identity” and argues for a multi-faceted understanding of “identity” with narrative identity to be given the greatest weight in the ethico-legal considerations of HGE.