US scientists are still banned from editing the DNA of embryos intended to become babies, a Congressional committee decided Tuesday.
The committee began its discussion with a version of the bill drafted last month that proposed dropping the ban.
If it had passed, it would have paved the way for scientists to use the CRISPR tool to edit the genes of embryos that would be become children.
A limited application of the technique is allowed in the UK, where scientists use it to repair DNA errors related to cellular energy sources, but not to edit genetic traits like intelligence or height.
While some experts have argued that the US will fall behind peer nations – forcing medical tourism – if the other ban is not lifted, others feared a slippery slope toward unintended consequences and eugenics.
During the Tuesday hearing, the committee voted to keep the amendment banning any alteration of the DNA of an embryo intended for pregnancy into the 2020 fiscal budget.
US scientists are still barred from changing the DNA of embryos if they are intended to be used in a pregnancy, a Congressional subcommittee decided on Tuesday
Critics of the proposed change worried it would lead to ‘designer babies’ while proponents argued that the previously existing law had stood in the way of scientific progress.
As it stands, in order to receive funding the US Food and Drug Administration may not consider approving any clinical trial that could result in a gene-edited baby.
The ban first came into effect in 2016, at the advent of the CRISPR gene editing tool and in the hopes of preventing scientists from making ‘designer babies.’
Researchers could – and still can – study how gene editing worked in embryos as long as they would never be implanted in a woman’s uterus or allowed to develop into fetuses.
This year, as the Congressional subcommittee plotted out the budget for the 2020 fiscal year, Congressman Sanford Bishop, a Democratic representative from Georgia, pushed for the amendment (called a rider) that created the ban, to be dropped.
That would have given scientists broad allowance to apply for approval of clinical trials to edit the genomes of embryos intended to become babies.
An unusual move, the new draft of the budget appropriations bill was met with concern from a scientific community still aghast over Chinese scientist He Jiankui’s secretive gene-editing of a pair of twin girls born last year.
He used CRISPR to create a pair of ‘three parent’ babies.
In defense of his work, he said changes to the babies’ DNA were life-saving, because they would have inherited HIV from their father.
But other scientists said the disease was manageable in more tested ways, and shortly after He’s announcement, it was discovered that the gene’s he’d altered would have much broader effects on the girls – including changing their brains.
And just yesterday, another study revealed that the same genetic alteration could shorten the twins’ life expectancies.
Those traits will all be passed to the twins’ children.
Around the world, many called for a moratorium on such research, and US scientists were widely appalled by what they called an unethical move.
But a more nuanced form of gene editing, called mitochondrial therapy, allows for the creation of three-parent babies with genetic alterations that would be passed down but in a much more limited way.
These edits simply fix faulty cellular powerhouses, rather than genetic traits, and are used in the UK.
‘The goal is reparative – this form of therapy allows families that have had children die from those mitochondrial disease [to have healthy children,’ explains Dr Arthur Caplan, a bioethicist at Columbia University.
‘It’s germline engineering but it’s not in the main genes, and I think there is room to permit that type of intervention.’
But, the wholesale removal of the rider wouldn’t have put this specific limit on how CRISPR could be used, and Dr Caplan worried that the nuance of the distinction would have been lost on lawmakers who don’t have scientific training.
‘If you take a survey of the members of Congress about where in their bodies their genes are, I wouldn’t expect many to pass,’ Dr Caplan says.
‘They are legislating in a vacuum of ignorance,’ he added, prior to the committee’s vote.
But the possible slippery slope that might have resulted was enough to persuade the Congressional committee to leave the ban in place.
‘The ethics hadn’t caught up with the science, and … the science has not caught up with the science,’ said Congressman Robert Aderholt, a Republican from Alabama, according to Stat News.
He said this line of research still has ‘too many unknowns and too many unintended consequences.’