The fierce global controversy over whether to alter the genes of future children and generations just got fiercer. On the eve of a high-profile scientific meeting in Hong Kong on human gene editing, the Chinese researcher and biotech entrepreneur He Jiankui announced he had already created genetically modified humans, twin girls born a few weeks ago.
The reckless actions of one scientist cannot and should not pre-empt the global public conversation over whether to proceed with reproductive germline editing, as the procedure is known. In fact, the conversation is now more urgent and necessary than ever. There’s a huge amount at stake for all of us.
‘Of course it’s not ethical’: shock at gene-edited baby claims
As knowledge of human genetics grew during the decades around the turn of the millennium, policymakers in dozens of countries came to agree that developing safe, effective gene therapies for sick people should be strongly supported, and that “germline” or “heritable” genetic modification, which would threaten fundamental human rights and equality, should be put off limits. The clearest and most forceful expression of that view was the Council of Europe’s 1997 Convention on Human Rights and Biomedicine (the Oviedo Convention), which prohibited germline interventions. “The ultimate fear is of intentional modification of the human genome so as to produce individuals or entire groups endowed with particular characteristics and required qualities,” it notes.
On the fringes of academia, enthusiasm for “designer babies” and “liberal eugenics” was readily discernible. A Princeton molecular biologist, for example, looked forward to a future in which the 10% who had been genetically enhanced – the “GenRich” – ruled over the “Naturals”. But this kind of zeal faded with the realisation that genetic modification of any sort was more far more technically challenging than expected, and by persistent trepidation about the social justice risks of dividing humanity into genetic haves and have-nots.
Then, just a few years ago, a new generation of genetic engineering techniques – more accurate, cheaper, and easier to use – burst into laboratories and headlines. In 2015, researchers used the gene-editing tool known as Crisp-Cas9 to alter the DNA of human embryos in their laboratory. The experiment sparked concern and even alarm within the scientific community, among the broader public, and from startup companies working to develop gene-editing therapies.
Many observers pointed out that the safety, human rights, and social justice risks of human germline modification remained as dire as ever. But some scientists and philosophers have taken the technological advance as an argument for green-lighting the move toward altering the genes of future humans.
Unfortunately, the classic confusion between “can” and “ought” is upon us again. And the effective consensus against germline modification, still with us in the form of dozens of countries’ legal prohibitions and the binding Council of Europe treaty, is now being challenged.
He’s claim to have created the first gene-edited babies, whose DNA was altered in an attempt to give them resistance to HIV infection, was made in the context of a publicity push that included YouTube videos of him, speaking in English, offering justifications for his actions. The claims, which have been subject to strong attack in the hours following the announcement, have not been verified, but if true, they would constitute recklessly unethical human experimentation and a grave abuse of human rights.
Further, He’s scientific grandstanding is an attempt to take a shortcut past the one point of agreement that has unified both those who promote altering the genes of future generations and those defending the existing agreements to forego it: because the decision will have such far-reaching societal effects, it must not be left to scientists alone. In 2015, the organisers of the first international summit on human gene editing, held shortly after publication of the first embryo editing experiment, issued a bold statement asserting that no efforts toward reproductive use of gene editing should proceed until and unless there was “broad societal consensus”.
Since then, however, there has been a concerning shift in the conversation. The US National Academies of Science, Engineering and Medicine, the UK’s Nuffield Council on Bioethics and several other influential scientific bodies have published reports about heritable genome editing that continue to call for “public engagement” but that clearly mark a step back from the idea of “broad societal consensus”.
What is so worrisome about this? For one, while still invoking the importance of public involvement, these recent recommendations have shrunk its meaning to the point of irrelevance. Furthermore, they have transformed the terms of the decision that needs to be made. It’s no longer whether reproductive genome editing should be permitted, but what kind of genes and traits can be altered. Has the implicit endorsement of reproductive gene editing in these reports facilitated the work of rogue actors such as He, providing ethical cover for his work?
In a time of increasingly open and toxic racism, xenophobia and socio-economic disparity, it’s especially important that we have an inclusive public conversation to consider the likely real-world effects of powerful genetic technologies, and to carefully map how they might best be used to build a safe and just world. This week in Hong Kong, the same scientific organisations that sponsored the first summit are holding a second one. Many of the summit’s organisers have argued that enforceable policies on human germline modification are unnecessary because scientists can regulate themselves. He’s claims show this was fanciful thinking.
One question that should be central at the Hong Kong summit is how to enable and support the kind of broadly inclusive public participation and truly democratic deliberation for which so many have called. Yet those most likely to press this question are missing from the summit’s organising committee, agenda, and list of speakers.
Where are the public interest figures – advocates working for disability rights, human rights, women’s health and reproductive justice, racial justice and children’s rights? Where are the social scientists and humanists, whose broad understandings of history and of social and economic dynamics would serve as a necessary counterpart to the bioethicists and scientists in attendance? What about representatives of the major gene editing startup companies, all of which have publicly disavowed any intention to pursue heritable gene editing?
We worry that these absences signal a further trend toward limiting the public’s role in deciding whether reproductive gene editing should be attempted. And without these perspectives, we wonder whether the crucial questions about its social context and consequences, so often slighted, can be adequately considered.
The Hong Kong summit is a high-profile step in a high-stakes controversy: how we will decide to use powerful biotechnologies with the capacity to literally reshape the human future. The mere performance of democratic deliberation will not suffice. We need a decision-making process that is broadly inclusive and meaningfully deliberative, that takes seriously the risk of exacerbating inequality and discrimination, and that carefully considers how human biotechnologies can be used to advance rather than undermine social justice and the common good.
Achieving meaningful public empowerment, a clear-eyed look at social consequences, and an acceptable level of honesty in the debate about human germline modification will not be easy, quick, or cheap. In the meantime, no individual or organisation – no scientist or fertility doctor, no biotech company or fertility clinic, no advisory committee or bioethics council or scientist-dominated summit – has the moral warrant to skip over these minimum criteria and try to hurry things along. The duty to foster meaningful democratic deliberation lies particularly with those who wish to go against the existing consensus, and who in the process risk irreversible genomic changes and new forms of inequality.
Katie Hasson is programme director on genetic justice and Marcy Darnovsky is executive director of the Center for Genetics and Society.