Gene-editing could make us superior humans, but is it ethical?
Donna Dickenson, Katie Hasson & Marcy Darnovsky
The announcement by the Chinese biophysicist He Jiankui in November 2018 that he had created the world’s first gene-edited babies – an egregious ethical and legal breach that resulted in a three-year prison sentence – gave discussions about heritable human genome editing a new sense of urgency. But those discussions are fundamentally flawed. Given the stakes – for today’s societies and future generations – a course correction is urgently needed.
Some scientists, futurists, and others assert the inevitability of heritable genome editing – altering embryos or gametes in order to produce genetically engineered children who will pass the changed genes and traits to their own offspring. These proponents seem to assume that, overall, it would probably be a good thing – as long as we wait until the technology is “safe” and apply it under the right circumstances. With this in mind, they have focused largely on creating a detailed roadmap for moving forward.
The organisers of the 2018 International Summit on Human Gene Editing, held just days after He’s announcement, proclaimed that “it is time to define a rigorous, responsible translational pathway toward” clinical trials of heritable genome editing. This echoed previous conclusions by the British Nuffield Council on Bioethics and the National Academies of Sciences and Medicine in the United States. The US National Academies, together with the United Kingdom’s Royal Society, then established the International Commission on the Clinical Use of Human Germline Genome Editing to fulfil this mission.
But as we – together with 18 other civil-society leaders, bioethicists, scientists, and lawyers in 11 countries – recently argued in the Geneva Statement on Heritable Human Genome Editing, this approach reflects a number of deeply problematic assumptions. Before we start trying to set standards for how and when scientists may genetically engineer future children, we must ask whether they should do it at all.
There is a strong case for barring heritable gene editing altogether. As the Geneva Statement notes, that was the consensus of earlier debates on the topic, dating back to the 1990s. This consensus is reflected in the laws of dozens of countries and in international treaties, such as the Oviedo Convention, a binding Council of Europe agreement.
Like the Geneva Statement, the previous consensus did not eschew all gene editing.
If the technology can be made safe, effective, and, ideally, affordable, it could be a powerful tool for treating the sick. But past debates concluded that gene editing should not be used to alter the genetic profile of future children and their offspring. And make no mistake: heritable genome editing is not a life-saving medical intervention. It neither treats nor cures any existing person. Rather, it aims to create a future person without a harmful genetic variant, or with a desired trait.
Moreover, the claim that genome editing is needed to prevent the inheritance of genetic disorders is misplaced. For the last 20 years, so-called pre-implantation genetic diagnosis – which screens embryos created through in vitro fertilization – has been enabling at-risk parents to have genetically related offspring who are unaffected by their genetic disorders.
The pervasiveness of such misconceptions is one of the reasons the Geneva Statement calls for a course correction in public and policy discussions about heritable genome editing. Another is that debates have typically emphasised scientific considerations, while ignoring or downplaying the social context in which efforts to alter human inheritance would take place.
It is dangerous to ignore systemic patterns of social discrimination and stratification, powerful commercial forces, and historical experience. The legacy of the eugenics movement alone – and its apotheosis in Nazi “racial hygiene” – should give anyone pause, and yet proponents of heritable genome editing typically dismiss it.
To be sure, coercive state-sponsored eugenics programmes may not reappear. But a commercial version, shaped by marketing claims and individual consumer choices, is a very real risk. If CRISPR gene-editing techniques became established in reproductive medicine, there is little reason to doubt that fertility clinics would soon be offering parents with sufficient means the option of genetic “upgrades.”
The third critical dimension of the necessary course correction is inclusiveness. Because heritable genome editing would affect everyone, broad public consensus is essential before any steps are taken. Yet scientists and professional bioethicists have so far dominated the conversation.
In the case of a technology that would likely be marketed to the wealthy as a way to produce “biologically superior” offspring, those consequences could include entrenching a new and fundamental form of inequality. The social implications of that outcome would be profound and terrifying. Cultivating an effective public debate that embraces a wide range of voices – including human-rights advocates, social scientists and humanities scholars, artists, religious figures, those who suffer from genetic conditions, and those who don’t – will require significant human and financial resources. The Geneva Statement’s call to clarify and reframe the issue is a step toward that end. Whether to employ heritable genome editing is not a decision we can take lightly. It certainly cannot be treated as a choice we have already made.