The Centre responds to news that on 26 November 2018 a Chinese scientist claimed that the first genome-edited babies had been born, created using gene-altering technology to prevent HIV infection.
Below Dr Sarah Chan explores why this is irresponsible and Dr Ingrid Young discusses how society may more easily address HIV.
Claims over human genome editing: scientific irresponsibility at its worst
Dr 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 is itself is deeply ethically problematic. Every scientific statement issued to date 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 despicable.
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 my employer or any organisations with which I am associated. This piece was first published in The Motley Coat, a blog of the Mason Institute and a quote has also appeared in The Guardian.
Considering the social in gene editing to prevent HIV
Dr Ingrid Young
The announcement reported in the Washington Post and initially reported in the MIT Technology Review that a scientist has created the first gene-edited babies is a highly concerning news story. As my Centre for Biomedicine, Self & Society colleague Sarah Chan articulates, to undertake such significant scientific research without appropriate governance and outside of a clearly regulated clinical process is very disturbing. In addition to the ethical issues raised by Chan, I would also like to raise concerns about how the reliance on HIV is not only problematic as a justification for this work, but also signals how social factors play a critical role in guiding ethical and scientific decisions in relation to health and wellbeing.
The stated motivation for this work – to prevent ‘damaging, life-altering disease’ – demonstrates a reliance on highly stigmatized and outdated views of HIV. Existing HIV treatment – where accessible – means that people living with HIV can live a healthy life. Moreover, as the Washington Post article points out, HIV treatment can suppress HIV viral loads which means children born to an HIV-positive parent are unlikely to develop HIV. Indeed, this also means that sexual partners – and in this case, the HIV-negative partner of study participants – are also incredibly unlikely to acquire HIV. As such, it was unclear why participants went through the complex ‘sperm-washing’ process when the father had a ‘deeply suppressed’ viral load. It is also unclear if and how sero-discordant couples who took part in the research were informed about the actual low risk of sero-discordant conception.
This is not to say that HIV is not stigmatized and that the social consequences of living with HIV are not problematic. Indeed, as is pointed out, discrimination in employment and access to health services can be a real consequence of an HIV diagnosis. However, we know that social inequalities and stigmas can also increase risk of HIV acquisition. Social determinants of health, including socio-economic inequalities, social stigmas and criminalisation of sexual (and other) practices are known to prevent access to effective harm reduction strategies that could reduce risk of HIV in the first place. In many ways, the ‘growing public health threat’ of HIV could be seen to be a result of poorly implemented or non-existent harm reduction strategies, rather than scientific deficiencies. One needs to consider that existing social, as well as biomedical, sciences might already contain the means by which HIV could be more easily addressed.
The attempt to create HIV-resistant babies also plays into an imagined future where science is the panacea for all biomedical ills. Research into HIV vaccines and the quest for HIV cures continue to enjoy major investment, significantly more than other forms of HIV prevention. This ongoing, major financial commitment to a scientific ‘magic bullet’ not only ignores the social factors that play a role in maintaining HIV risk but may also be at the expense of people already affected by HIV. While we do not know if this ‘breakthrough’ will be successful, or replicable, one must ask if this announcement truly considers the wellbeing of future generations, or if it draws on and reinforces social stigmas to justify an unregulated scientific experiment that brings with it considerable controversy and ethical debate.