Sun, 14 July 2024

Newsletter sign-up

Subscribe now
The House Live All
Transformation in Urban Underground Infrastructure Partner content
We need a heart disease action plan to end heartbreak for good Partner content
By British Heart Foundation
Refining our approach to skills development Partner content
“The Forgotten Majority”: Leading Charities Call for Action to Tackle Long-Term Conditions Partner content
Press releases

'Second age of eugenics': Would you select an embryo for its chances of higher intelligence?

10 min read

Would you select an embryo according to its chances of higher intelligence? And is that even possible? Sienna Rodgers explores the ‘second age of eugenics’

Which prospective parent has not wanted to influence how their child will turn out? It underpins our choice of partner, after all. But what if one could amplify that influence further, harnessing the latest advances in reproductive and genetic technologies to select for intelligence, say, or sporting ability? 

Worries about “designer babies” are as old as the dawn of in vitro fertilisation (IVF) 45 years ago, but the options available to parents are growing quickly, with even the NHS about to offer whole genome sequencing to healthy newborns. Are we in a “second age of eugenics”?

“There’s going to be less suffering in the world. People are going to be better-looking, healthier and smarter – what’s not to like?”

Bangladeshi-American geneticist Razib Khan hit headlines a decade ago when he sequenced his son’s genome in utero – meaning he determined his son’s entire genetic make-up – and as far as we know this was the first case of a healthy person having it done before birth. What was Khan looking for? “Any noticeable disease mutations, but the probability of that was super low,” he tells The House. “Mostly it was proof of principle: can I do it? And I did it.”

Khan has declared that we are in the “second age of eugenics”. He reports that would-be parents in the US are not stopping at non-invasive prenatal testing – the kind offered on the NHS to test for conditions such as Down’s syndrome – but going much further.

Americans are employing preimplantation genetic testing for both monogenic disorders (those caused by the inheritance of single gene mutations, such as haemophilia and cystic fibrosis) and polygenic disorders (those requiring multiple genetic factors to manifest, such as diabetes and heart disease). More controversially still, they are using polygenic risk scores, which purport to offer a measure of your disease risk due to your genes. This embryo screening is only possible, of course, with in vitro fertilisation (IVF).

When it comes to screening embryos for complex traits, which may be born out of a desire to have more intelligent children, for example, does Khan worry about unintended consequences? “There’s going to be less suffering in the world. People are going to be better-looking, healthier and smarter – what’s not to like? But the main issue is you smooth out all the rough edges, and you might over-optimise,” Khan replies.

The world’s richest are using IVF (and surrogacy) more and more. The very wealthiest man, billionaire Elon Musk, used IVF for five of the six children he had with his first wife, and to have another set of twins with Shivon Zilis, a senior employee at a company he founded. According to Walter Isaacson’s 2023 biography Elon Musk, Zilis had children with Musk because, in her words: “He really wants smart people to have kids, so he encouraged me to.” 

Yet Khan says the tech giant, who is autistic himself, is not wholly comfortable with some aspects of embryo selection. “He’s a little concerned that people will select too much for ‘I want my kid to be a dentist’, as opposed to ‘I want my kid to start a company that revolutionises space technology’,” Khan says. “Do you really want your kid to do that? No, probably not, but you want someone’s kid to do that.” The geneticist shares this unease but says the risk of losing too much variation is “pretty far in the future”.

“Whether you can think so mechanically about intelligence like this is hugely simplified, very controversial, and it’s not lawful here”

These ideas have had less traction in Britain, although Westminster’s favourite maverick Dominic Cummings predicted on his blog in 2014 – while advising Michael Gove at the Department for Education – that parents in the future would inevitably select embryos for intelligence. His worry was that this would only be available to the rich and he therefore suggested that “a national health system should fund everybody to do this”.

For now, that doesn’t look at all likely. In the United Kingdom, embryo selection is only legal to avoid the most serious inherited illnesses, and regulators predict it will stay that way for the foreseeable.

“Whether you can think so mechanically about intelligence like this is hugely simplified, very controversial, and it’s not lawful here,” says Peter Thompson, chief executive of the Human Fertilisation and Embryology Authority (HFEA), which regulates fertility services and human embryo research in the UK.

“There is no federal regulation of any of this stuff in America. As a result, while clearly some very good work goes on in American labs, the concerns are that people are offered things which – even if they’re not unsafe – are unproven and are being over-claimed for.”

Thompson continues: “It may be over time that some of this polygenic risk scoring is proven to be effective. But our worry at the moment is that this is being offered in other parts of the world where the evidence base is not robust at all.”

The innovations taking place at home are more in the postnatal than prenatal area. Genomics England, a company set up by the Department of Health to run the now-completed 100,000 Genomes Project which sequenced whole genomes from NHS patients, has embarked on a new research study that does the same with newborns. Instead of the heel prick test currently offered to babies on the NHS, which looks for nine conditions (soon to be 10), their whole genome will be sequenced, and many more conditions will be tested for.

The Newborn Genomes Programme, set to determine the genetic information of 100,000 babies, will be launched imminently and start with just a handful of NHS trusts before rolling out later this year to 40 trusts.

Professor Frances Flinter, a clinical geneticist who sits on the HFEA board, has doubts about the science of all this. “When it comes to making predictions about IQ, sporting ability, musical ability, the scientific evidence simply doesn’t exist,” she says of the services offered in the US. Her fears also extend to the British ambition of whole genome sequencing (WGS) for newborns.

“Whole genome sequencing is an incredibly powerful technology. As a geneticist who’s been working in the area for more than 40 years, I’m still amazed at how much information our whole genome sequence can generate. But it is very difficult, as things stand, for us to be able to interpret much of that sequence.”

Flinter tells The House that recent WGS in UK adults has led to the surprising discovery that many apparently healthy people have alterations in their DNA that experts would have expected to have caused them significant illness at a much younger age.

“For that reason, making predictions in an apparently healthy newborn about their future health, based on alterations in their DNA, is a risky thing to do. Because you may well be led to conclude that they are going to develop a serious illness, which in fact may not ever affect them,” she explains.

Along with other experts in the field, Flinter is uneasy about false positives needlessly increasing the anxiety of families and about how to prioritise asymptomatic babies clinically. She suggests only offering WGS to symptomatic undiagnosed children, which could avoid over-medicalisation and over-burdening the NHS to the detriment of acutely ill children.

Heel prick test
Newborn undergoes heel prick test (David Gee 4 / Alamy Stock Photo)

Richard Scott, interim chief executive of Genomics England, believes the targeted nature of their testing is key to addressing such questions. “What we’re looking for are rare, severe, treatable conditions. We’re doing this because of the thousands of children who are born each year with these conditions where one can potentially avoid harm,” he says.

“The conditions that we’re looking for, almost all have a follow-on test that one can do following the genomic test”, which will be a “simple way to confirm whether or not the child has the condition”, Scott adds. He says they are taking a “conservative approach” to picking which genetic variants they tell parents about.

“We have control over what genes and conditions are looked for. We’ve gone through a really careful process, both with public consultation and working with the NHS to identify the right list of conditions to look for… We will not be looking for conditions beyond that list. We will not be looking for adult-onset conditions, for example.”

The other major concern raised is around data privacy. GeneWatch UK, a not-for-profit organisation that campaigns for genetics to be used in the public interest, has raised alarm bells over what it perceives as a loss of genetic privacy arising from the Data Protection and Digital Information Bill currently going through Parliament. 

The group boldly warns that this piece of legislation risks creating a “surveillance state”. Whereas currently genetic data is always classed as personal data and requires special safeguards, they say the bill would mean only genetic data that is attached to an individual’s name or other identifiers will require those protections.

“I think many people will be shocked that their genetic information could be not treated as personal data and handed over to commercial companies or even sent abroad without any safeguards whatsoever,” says GeneWatch UK’s executive director Dr Helen Wallace.

“Most of the commercial companies and the research projects currently say they won’t let police access the information unless they get a warrant from a court. Many of them say they’d oppose that and try to stop that happening. But this new law potentially allows routine searching of these databases by the police, because it no longer requires that kind of oversight by a court.”

Wallace fears the bill could lead to a loss of public trust in genetic databases. “We need Lords and MPs to wake up and understand the implications,” she says. Some peers echoed GeneWatch UK’s concerns at the second reading in December, but most are focused on the new powers it gives to monitor the bank accounts of benefit claimants.

For his part, Genomics England’s Richard Scott does not believe the legislation makes such a change. “We don’t expect any change to the very cautious approach that we take,” he says firmly. “We are absolutely clear that we do not provide and would not provide data to insurance companies, for example – that’s an example of one of the very clear red lines over the 10 years of Genomics England.”

While the use of clinical instruments such as polygenic risk scores is well-regulated in Britain compared with the Wild West of the US, demand for such innovations could be on the rise here. “It may well be that many more people will find out about things like inherited diseases in the family well before they start a family themselves. You can see the possibility in time that more people may be requesting things like embryo screening,” says the HFEA’s Peter Thompson.

While screening embryos for anything other than serious illnesses is not currently permitted here in the UK, there is little our regulators can do about genetic tourism. But bioscience is already one of Britain’s greatest strengths – could the UK also be leading the debate about the ethics of these practices? As Thompson recommends: “We do need a societal discussion.” 

PoliticsHome Newsletters

Get the inside track on what MPs and Peers are talking about. Sign up to The House's morning email for the latest insight and reaction from Parliamentarians, policy-makers and organisations.

Read the most recent article written by Sienna Rodgers - New Labour MPs To Face Immediate Pressure Over Two-Child Cap


Health Technology