It is still too early to test the use of powerful new technologies to edit genes that can be passed from generation to generation, according to the directors of the Third International Summit on Human Genome Editing, which concluded in London on Wednesday.
Techniques that have made it easier to manipulate DNA still produce too many errors for which scientists are confident that some born from edited embryos will be healthy, according to the directors of the Third International Summit on Human Genome Editing.
In addition, a wider social debate on the implications of humanity would be necessary before moving forward, the top authors said.
“Fight back this time”
“Heritable human genome editing remains unacceptable at this time,” the council said in a statement at the top of the statement. “The human genome should not be used for editing unless, at a minimum, it meets reasonable standards of safety and efficacy, is legally sanctioned, and has been developed and tested under a stricter inspection system that is subject to government responsibility. At this time, these conditions have not been met.”
Despite the decision, critics deplored it, saying it gave short shrift to the most in-depth ethical debate surrounding genetic modification.
Critics are also troubled by what they say is a subtle but surprising shift in the debate over genetic modifications that can be inherited – an issue raised at an international summit in 2018 – to a discussion of technical hurdles. make sure those modifications are overridden.
“Can we hit a break, or hit a trigger?”
“We all know you can see a yellow light and sometimes slow down and hit the brakes and sometimes hit the gas. And we have to ask: Are you hitting the gas or hitting the brakes,” said Bill Hurlbut; a bioethicist at Arizona State University who helped set up a parallel project called the Global Observatory for Genome Editing aimed at broadening the discussion. “I think I’m hitting steam here.”
Hurlbut and others also say the debate is being held among a small cadre of elite researchers and raises too many deep questions for humanity to limit it that way. It requires a much broader social discussion, they say.
“The approach taken by the founders is an extreme case of scientific indiscretion, and the unwillingness to accept that society has the right to impose ethical limits on science,” said David King, who heads the watchdog group Stop Designer Babies.
The fear is that a mistake could introduce new genetic mutations into the gene pool that would then be passed down for generations. Some critics also fear that a slippery slope to “designer babies” and other dystopian fears of creating a superstitious race could reveal.
The main conclusion came after more than 400 scientists, doctors, bioethicists, patients and others spent three days discussing the pros and cons of new techniques that treat genes more easily than ever before.
It’s the first summit since He Jiankui, a scientist from China, shocked the world at the last summit in Hong Kong in 2018, announcing that he used a gene-editing technique called CRISPR to create the first genetically modified humans — he made twin girls from gene-edited embryos. Physicist Many cases were reported, because no one knew if it was safe. A court in China finally sentenced him to three years in prison.
That thing looms like a huge shadow at the climax of this year.
“While the potential benefits of the technology are clear, so is the potential for abuse,” Linda Partridge, a geneticist at The Royal Society, said at the summit’s opening on Monday. “And while it’s easier to plot a baby spectrum designer the less you know about genetics, that doesn’t mean unscrupulous players can’t use the technology to further their interests.”
Huge strides have also been made in the potential benefits of gene editing
At the top, scientists presented the latest research showing that scientists have quietly made huge strides in honing their gene-editing skills in the last five years.
On the other hand, they registered new evidence about how safe it would be to try to make new types of baby care. Editing remains prone to missing its intended target in DNA and instead creating unexpected mutations, the scientists reported.
“That’s what really worries us,” said Dr. Dagan Wells, a reproductive geneticist at the University of Oxford. “These events really provide a warning.”
However, several scientists have also described advances in developing techniques to provide safer ways for people to edit embryos, eggs and sperm, as well as new gene-editing techniques that are more accurate.
Another ethical concern: Who can afford theater?
Over the last day, scientists, bioethicists and lawyers have debated the ethical pros and cons of ever using these techniques to alter human genes, eggs or sperm.
“There are a lot of serious objections to reproductive genome modification,” Tina Rulli, a bioethicist at the University of California, Davis, argued.
“They include: Concerns about the health of modification … the risk of dangerous modifications released into the human gene pool, the slippery slope to use technology as designer babies, the unethical eugenic use of technology that harms communities of vices; and inequitable access to skills that only benefit the rich.”
Others, however, suggested that the benefits could be huge, including thousands of serious genetic diseases that have plagued families for generations.
“This has tremendous potential to transform human health,” said Theodoric Egli, a biologist at Columbia University studying the human embryo gene.
It could also help infertile couples have children with relatives, others said.
“Where having a biological family is still imperative, in those contexts and cultures, this could make it a compelling case of gene-reinheritance,” said Ephrat Levy-Lahad, director of the Medical Genetics Institute at the Shaare Zedek Medical Center in Israel. .
A cure for some forms of sickle cell is possible – but at what cost?
In the first couple of days, dramatic advances have been made in using gene-editing to treat a variety of diseases in people already born, from rare genetic diseases to more common diseases such as cancer and heart disease.
The progress has been particularly dramatic for sickle cell disease and a related condition known as beta thalassemia. The highlight was highlighted by Victoria Gray, a sickle cell patient in Mississippi who has followed NPR for years. Gray and more than a dozen other patients were cured by themselves. And that treatment could be the first gene-editing treatment to be approved this year.
But this also raises concerns – that the treatments are too complex and too expensive to be widely available to everyone in need, especially in less affluent countries where sickle cell disease is most common.
“The most profound… are unstable.”
In their closing statement, the authors noted that making gene-editing therapies widely accessible is a priority.
“To realize its full therapeutic potential, research is needed to expand the diseases it can treat and to better understand the risks and unknown side effects,” Robin Lovell-Badge of the Francis Crick Institute, who led the summit, said as he read. publishing clause “The most profound effects of somatic gene therapy are invisible. A global role for affordable, equitable access to these treatments is desperately needed.”
The summit is sponsored by the British Royal Society, the UK Academy of Medical Sciences, Sciences and Medicine and the US National Academy of Sciences.
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