How might a liberal democratic community best regulate human genetic engineering? Relevant debates widely deploy the usually undefined term “human dignity.” Its indeterminacy in meaning and use renders it useless as a guiding principle. In this article, I reject the human genome as somehow invested with a moral status, a position I call “genetic essentialism.” I explain why a critique of genetic essentialism is not a strawman and argue against defining human rights in terms of genetic essentialism. As an alternative, I propose dignity as the decisional autonomy of future persons, held in trust by the current generation. I show why a future person could be expected to have an interest in decisional autonomy and how popular deliberation, combined with expert medical and bioethical opinion, could generate principled agreement on how the decisional autonomy of future persons might be configured at the point of genetic engineering.
Two major reports in the UK and USA have recently sanctioned as ethically acceptable genome editing of future generations for the treatment of serious rare inherited conditions. This marks an important turning point in the application of recombinant DNA techniques to humans. The central question this paper addresses is how did it became possible for human genetic engineering (HGE) of future generations to move from an illegitimate idea associated with eugenics in the 1980s to a concrete proposal sanctioned by scientists and bioethicists in 2020? The paper uses the concept of a regime of normativity to understand the co-evolution and mutual shaping of technology, imaginaries, norms and governance processes in debates about HGE in the USA and UK. It will be argued that interlinked discursive, institutional, political and technological changes have made proposals for the use of genome editing in the genetic engineering of future generations both “thinkable” and legitimate.
With the development of practical means of human germline genome editing (HGGE) in recent years, there have been calls for stricter regulation and oversight over HGGE interventions with potential for heritable changes in the germline. An international moratorium has been advocated. We examine the practicality of such a proposal, as well as of a regulation through the “traditional” mechanisms of international and municipal laws. We argue that these mechanisms are unlikely to achieve their intended objectives and that the better approach is to engage the international community of stakeholders, researchers, scientists, clinicians, and other workers directly involved in the field in working toward the development of an “informed adaptive consensus”. We offer suggestions as to how this may be achieved and how existing indirect levers of regulation may be harnessed toward this end.