Is it time to change law on genome editing of human embryos? UK’s first citizens’ jury on subject reaches conclusion at Wellcome Genome Campus

Should the government allow genetic conditions to be ‘edited out’ of a family tree forever? With the advent of the technology to do just that, this highly complex question is no longer merely theoretical.

And it was considered by 21 people from across the UK who spent a week in a room at the world-famous Wellcome Genome Campus.

The UK’s first Citizens’ Jury on Human Embryo Editing comprised individuals who had never met, and had different backgrounds and opinions, but they all had lived experience of serious hereditary health conditions, as carriers, carers or patients.

The 18 women and four men on the jury wrestled with ideas of fairness in terms of access to such technology, the dilemma of how to define what a ‘serious’ condition is – and what it means for future generations if we allow such significant irreversible changes to our genome.

Research licences can be granted in the UK for genome editing on human embryos outside the body. But using human germline genome editing – edits to DNA in egg, sperm or embryo cells – in IVF treatment remains illegal here and in most countries. But that didn’t stop Dr He Jiankui, from Shenzhen in Guangdong Province, China, claiming in 2018 that he had created the world's first gene-edited babies.

In an IVF clinic, he used the CRISPR-Cas9 genetic ‘scissors’ – which would would earn Jennifer Doudna and Emmanuelle Charpentier the Nobel Prize for Chemistry in 2020 – to alter the CCR5 gene in embryos, then forged documents so that doctors unknowingly implanted them.

He said the genetic change meant the resulting twins, nicknamed Lulu and Nana, were resistant to HIV infection – but scientists studying his research since said in fact he had made a different, previously unseen change, with unknown effects, that could be passed on if they grow up to have children.

Amid global outrage at his reckless actions, He was fined and imprisoned for three years.

But the debate – and the legal, ethical, moral and scientific questions that surround it – remains a live issue.

Among the themes discussed by the jurors was the question of how we would determine what could be edited. How do you weigh up the seriousness of ‘life threatening’ or ‘life limiting’ as criteria for deciding whether genome editing should be legal or not?

“Once extreme is ‘edited out’, the less extreme becomes extreme; where do we stop?” said one juror.

And a juror with spinal muscular atrophy said it was “not something I wouldn’t want to change because I feel that my identity is absolutely connected to having that genetic condition”.

But another argued that should not be a consideration “because you form your identity after birth”.

That, however, brings up the question of consent.

“How do we decide for others? Children could disagree with parents’ decision either way,” said one juror.

Some jurors suggested there were voices missing or under-represented in the room to aid that discussion – notably those who had been disabled from birth as a result of a genetic condition.

For some, however, the benefits were to obvious to ignore.

“I have a rare genetic condition and I live with excruciating physical and emotional pain. How much more suffering do you need to see before the law is changed and embryos can be edited?” the juror asked.

But others argued there needs to be more certainty and guarantees that genome editing could not be used for mere cosmetic purposes or eugenics – the belief that we can improve the human population by mating people with desirable hereditary traits, an idea that had its most notorious incarnation in Adolf Hitler’s obsession with creating a ‘superior’ Aryan race.

The jurors recognised there is a “tangible risk of unintended consequences”.

Despite these concerns, some felt research must continue apace as it could take some time for genome editing to be usable in a clinical setting, and delay could only prolong suffering, or remove options from future generations.

The jury also heard from faith speakers to gain a religious perspective on the subject, exploring whether faith and a God precludes or supports embryo editing, and discussing philosophical and scientific positions on when life is thought to begin.

But, in general, they felt that ethics was more universally applicable – and concluded that those with religious beliefs should not impose these on others or expect science to comply with them

One juror said: “Religion should not have a say in science.”

After a long and nuanced debate, the jury voted 17 to four in favour of the government considering changing the law to allow intentional genome editing of human embryos for serious genetic conditions – and most felt that these discussions should be beginning now.

Among their 15 recommendations, they called for a clear plan and timeline to be developed on the discussion to maintain momentum.

They said that equity and diversity should be central to all decisions, that there was ongoing engagement between decision-makers and users of services to avoid a power imbalance in decision making.

And they suggested a clear framework was needed for giving and obtaining consent so that a balanced decision can be taken in the best interests, and respecting the rights of, the embryo, child and parents, with a genuine choice so that there would be an option to say no to the technology and be in no way disadvantaged.

Fair and balanced evidence would be needed about genetic conditions, they concluded, so that people understand what it is like to live with the condition and have all the information they need to make an informed decision about editing.

Support services should be available to safeguard physical, emotional and mental health needs, and transparent information on embryo editing.

They also recommended equitable access, ensuring embryo editing is available via publicly funded health services, equal access to insurance and no discrimination on the basis of genetic information, with personal information kept private.

And they said genome editing should only be available if there are no alternatives, with a clear framework to identify genetic conditions for which genome editing is acceptable.

The jurors and their families came back together last week to watch the premiere of In Our Lifetime – a film about the jury’s deliberations – at the Cambridge Arts Picturehouse in front of an invited audience that included policy-makers, healthcare professionals and scientists.

Juror Will concluded: “I feel being part of the process is a privilege. It feels both onerous and liberating. It’s heavy, it’s exhausting, it’s challenging, but it’s empowering as well.”

Wellcome Connecting Science partnered with Involve and Genetic Alliance UK to run the Citizens’ Jury.