by Sarah Chan
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.
