The Third International Summit on Human Genome Editing, held earlier this month at the Francis Crick Institute in London, closed with a statement that “heritable human genome editing remains unacceptable at this time”, adding, “Public discussions and policy debates continue and are important for resolving whether this technology should be used. Governance frameworks and ethical principles for the responsible use of heritable human genome editing are not in place.” Pointing to “risks and unintended effects” of gene editing, the statement warned that “Necessary safety and efficacy standards have not been met.”
The statement may have prompted sighs of relief from those who were concerned that the summit’s participants would exploit the event to immediately push for changing the law banning human germline (heritable) genetic modification (HGM) in the UK. Indeed, it was a significant step back from the conclusion of the previous summit on HGM in 2018, which concluded that “it is time to define a rigorous, responsible translational pathway” toward clinical trials of germline editing.
But the statement failed to meaningfully engage with the biggest ethical question around HGM. It focused on how to make the technology acceptable by improving “safety and efficacy”, while failing to lay to rest the spectre of eugenics that loomed over the summit. The anti-eugenics group Stop Designer Babies has pointed out that legalising HGM will inevitably lead to a eugenic society of genetic “haves” and “have-nots” in which wealthy parents can choose “designer” traits in their babies, such as skin, hair and eye colour, IQ, and athletic prowess. In the worst case scenario, those who can’t afford genetic “enhancement” would be banned from reproducing. And the statement doesn’t clarify whether, if scientists manage to solve the safety issues yet “public discussions and policy debates” come up with the answer that HGM should continue to be banned on ethical grounds, that decision will be accepted.
This question must be faced head-on because contrary to common belief, eugenics didn’t die with the Nazis. It is very much alive and kicking in scientific circles in the UK and US. Yet conspicuously absent from the publicity around the summit were the disconcertingly eugenicist connections and views of some of the scientists associated with it and, historically, with the venue that hosted it, the Crick Institute. That topic will be returned to later in this article.
Exploiting people with genetic diseases
The media coverage of the Crick summit – featuring quotes from its participant and allied scientists – was far less cautious than the summit’s official closing statement. The media strongly focused on the claimed need to gene edit humans to cure serious genetic diseases that lead to disability. For example, the Observer’s science editor Robin McKie wrote, “Ministers must consider changing the law to allow scientists to carry out genome editing of human embryos for serious genetic conditions – as a matter of urgency.”
To back his bullish position, McKie quoted not the organisers of the summit, but the findings of “a newly published report by a UK citizens’ jury made up of individuals affected by genetic conditions”. That report, said McKie, is “the first in-depth study of the views of individuals who live with genetic conditions about the editing of human embryos to treat hereditary disorders” and was presented at the summit.
Read More: Ethically Unacceptable: Eugenics By Any Other Name Is Still Eugenics