Heritable genome editing: ethical aspects of a developing domain

Abstract

In the past decade, scientific developments in human germline genome editing (GGE) have reinvigorated questions about research ethics, responsible innovation, and what it means to do good in the field of reproductive biology and medicine. In recent years, it has become part of the ethical debate on GGE whether categorical objections about (un)naturalness, dignity, respect for the gene pool as common heritage, are and should be supplemented by more pragmatic questions about safety, utility, efficacy, and potential ‘misuse’, which seem to become more dominant in the moral discussion. This mini-review summarizes the morally relevant aspects of the rapidly developing domain of GGE, focusing on reproductive applications and with special attention to the ethical questions pertaining to how this technology may affect the interests of those that come to be by means of it. While vital, this encompasses more than safety considerations. Taking this perspective, it will be crucial to engage with normative questions about how GGE maps on the importance of accommodating future parents’ preference to have genetically related children, and how far we should go to facilitate this. Similarly, a comprehensive ethical debate about ‘appropriate application’ of GGE cannot shake off the more fundamental question about how notions like ‘normalcy’, ‘quality of life’, and ‘disability’ can be conceptualized. This is crucial in view of respecting persons whichever traits they have and in view of acceptable boundaries to parental responsibilities.