Half in UK back genome editing to prevent severe diseases

More than half the UK backs the idea of rewriting the DNA of human embryos to prevent severe or life-threatening diseases, according to a survey. Commissioned by the Progress Educational Trust (PET), a fertility and genomics charity, the Ipsos poll found that 53% of people support the use of human genome editing to prevent children from developing serious conditions such as cystic fibrosis. There was less enthusiasm for use of the procedure to prevent milder conditions such as asthma, with only 36% in favour, and to create designer babies, with only a fifth expressing support, but views on the technology differed dramatically with age.

Younger generations were far more in favour of designer babies than older people, with 38% of 16- to 24-year-olds and 31% of 25- to 34-year-olds supporting the use of gene editing to allow parents to choose features such as their child’s height and eye and hair colour. In the UK and many other countries it is illegal to perform genome editing on embryos that are intended for pregnancies, but the restrictions could be lifted if research shows the procedure can safely prevent severe diseases. Genome editing has been hailed as a potential gamechanger for dealing with a raft of heritable diseases ranging from cystic fibrosis and muscular dystrophy to Tay-Sachs, a rare condition that progressively destroys the nervous system.

In principle, the faulty genes that cause the diseases can be rewritten in IVF embryos, allowing those embryos to develop into healthy babies. Despite enormous progress in the field, work is still needed to perfect genome editing and ensure it does not cause unintended changes to DNA. Because the edits would be performed in embryos, the altered DNA would affect every cell in the child’s body, and could be passed on to future generations.

In 2018 a Chinese researcher, He Jiankui, provoked global condemnation when he announced he had tried to edit the genomes of two baby girls in the hope of making them immune to HIV. He was later jailed for violating medical regulations. The furore led to an international commission, convened by the Royal Society and others, which concluded that genome editing was far from ready for the clinic .

In a report on the survey’s findings, PET says that if genome editing is put to medical use, it must be done in a “scientifically and ethically rigorous way”. The authors say it is “striking” that younger people are more willing to countenance human genome editing for preferred characteristics such as eye and hair colour. “It is worth paying attention to these views, but we should continue to prioritise medical needs in the first instance,” they write.

John Harris, emeritus professor of bioethics at the University of Manchester, said he supported the “maximum possible choice” for parents in choosing the physical traits of their children if the traits in themselves are not harmful. “I don’t think it’s wrong in principle to engineer either harmless or better than original traits in our children if we can,” he said. “If it’s not wrong to wish for a bonnie brown-eyed girl, how does it become wrong to implement that if you have the power? We are too ready to shout eugenics when people want to exercise innocent preferences.

” According to the survey of a nationally representative 2,233 UK adults, two-thirds believe the NHS should offer fertility treatment for people who are infertile and want to conceive, but the report notes that access to free IVF is still a “postcode lottery”. Support is greatest for childless heterosexual couples, at 49%, while only 19% are in favour of the NHS providing fertility treatment for single people or transgender people. “It’s disappointing that despite gender discrimination being illegal in the UK, attitudes to family structures remain traditional,” said Prof Alison Murdoch, the president of the British Fertility Society.

“The better news, though, is that most people seem to have no objection to IVF – a major change from 40 years ago. IVF is now a routine procedure, so why doesn’t the NHS give everyone a chance?”.