By Sarah Chan
This post first appeared in The Motley Coat on 26 November 2018.
The announcement made today, that the world’s first genome-edited babies have been born in China, is of grave ethical concern.
In evaluating this news, we should first remember that these claims have not yet been scientifically validated through peer reviewed publication and independent scientific review. Yet whether or not the veracity of these reports is eventually borne out, making such claims, in a way that seems deliberately designed to provoke maximum controversy and shock value, is irresponsible and unethical.
Human genome editing is a highly contested, still emerging technology. While it holds tremendous potential for benefit, its development must be carefully governed via a process of inclusive global discussion amongst all those concerned. Instead, the covert application of human genome editing followed by this cavalier announcement of the work as a fait accompli puts at risk the entire future of this crucial technology. It threatens to jeopardise the relationship between science and society as well as causing damage to China’s international scientific reputation, and might potentially set the global development of valuable therapies back by years. Good science is not just about generating knowledge in a vacuum; context and consequences are vitally important, and the consequences of this irresponsible action may be dire indeed.
Furthermore, leaving aside the wider scientific and social consequences, the research in itself is deeply ethically problematic. Every scientific and ethical statement issued to date (notable examples of which include those from the US National Academies of Science and the UK’s Nuffield Council on Bioethics) has emphasized the need for further research before genome editing is ready for clinical application to human embryos. The premature application of this experimental procedure involved exposing the children to as-yet uncharacterised, poorly understood risks. This might be justifiable where there are huge benefits to be gained, as for example where children would otherwise suffer a life-threatening, otherwise incurable disease. The claim made by those responsible for the research, however, is that the babies have been genome-edited in an attempt to make them immune to HIV. The lifetime risk of contracting HIV is extremely low in the first place; there are other means of prevention; and it is no longer an incurable, inevitably terminal disease. Putting these children at such drastic risk for such a marginal gain is unjustifiable. And playing with children’s health and families’ hopes in order to use them as a means for a cheap publicity stunt is nothing short of disgraceful.
Sarah Chan is Director of the Mason Institute for Medicine, Life Sciences and the Law; Chancellor’s Fellow in the Usher Institute for Population Health Sciences, University of Edinburgh; and Co-Principal Investigator on the Wellcome Trust-funded Centre for Biomedicine, Self and Society.
Author’s declaration: The views expressed in this statement are my own as an academic working on the ethics of human genome editing, and do not reflect any official position of the Mason Institute, my employer or any organisations with which I am associated.