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Hundreds of scientists, doctors, bioethicists, patients, and others began gathering in London on Monday for the third International Summit on Human Genome Editing. Peak this week will discuss and perhaps give suggestions about the thorny issues raised by powerful new gene-editing technologies.
The last time the world’s scientists gathered to discuss the pros and cons of gene editing — in Hong Kong in late 2018 — Jiankui himself, a biophysicist and researcher at the University of Southern Science and Technology in Shenzhen, China, hit his audience with a bombshell. announcement He had created the first gene-edited babies, he told the crowd — twin girls born from embryos that he had modified using the gene-editing technique CRISPR.
He, who was educated at Rice University and Stanford University, did this in the hope of protecting the girl from creating a virus with infected aids. (The girls’ father was HIV-positive). But his announcement was immediately condemned by irresponsible human experiments. Too little research had been done, critics said, to know whether genetically modifying embryos in this way would be safe.. The latter was sentenced by a Chinese court to three years in prison for violating medical regulations.
In it, more than four years after the stunning announcement, scientists have honed their gene-editing powers.
“A lot has happened in five years. It’s been a busy time,” says Robin Lovell-Badge of the Francis Crick Institute in London, who led the plan to convene the new summit.
Doctors have come to use CRISPR to treat or better understand many diseases, including devastating disorders like sickle cell disease, and conditions like heart disease and cancer that are even more common and genetically driven.
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Recently, scientists have produced new evidence about the risks and possible failures of gene-editing, while also developing more sophisticated techniques that could be safer and more accurate.
“We’re in an exciting moment with genome-editing,” says Jennifer Doudna at the University of California, Berkeley, who helped discover CRISPR. “It certainly challenges us at the same time.”
“We help a lot of people”
One big remaining challenge and ethical question is whether scientists should try again to make gene-edited babies by modifying the DNA in human sperm, eggs or embryos. Such techniques, if any, could help families afflicted with devastating genetic disorders.
“There are more than 10,000 single genetic mutations that commonly affect probably hundreds of millions of people around the world,” says Shoukhrat Mitalipov, a biologist at Oregon Medical and Science University in Portland, who has tried to find ways to safely gene-edit humans. embryos “We were able to help a lot of people.”
But the fear is a mistake to create new genetic diseases that are then passed down through the generations. Some scientists are also worried about opening up a slippery slope as “designer babies” – children whose parents try you can get your wrist
“If we were to allow parents to reproduce and change their children, we would create new groups of people who are biologically different from each other and would be changed in some ways that are supposed to increase them,” says Marcy Darnovsky, head of the Center. for Genetics and Society in San Francisco. “And they’re going to be — unfortunately — they think they’re an increased race — a better group of people. And I think it could really run into the inequities that we already have in our world.”
The debate among many scientists seems to have turned on how to safely edit the genome
Despite those concerns, some critics say the debate has raged for five years over whether a ban on hereditary genetic modifications should ever be lifted, what technical hurdles are needed to safely overcome it — and what diseases doctors are trying to eradicate.
As evidence of that, critics point out that the subject of embryos, sperm or eggs to modify the machines in general, which will then be passed on to every subsequent generation, is the focus of only one of the three days of this peak – the first. such a conversation with CRISPR children were reported.
“This is a pretty ridiculous issue,” says Sheila Jasanoff, a professor of science and technology studies at Harvard’s Kennedy School of Government.
“Instead of rejuvenating the call to say, ‘We need to be much more careful,'” says Jasanoff, “it’s as if the entire scientific community has heaved a sigh of relief and said, ‘Well, look, of course they are; this man has crossed the line. He’s clearly out of line. . And therefore everything else is now open for the taking. So now the question before us is to make sure that we set the guidelines and the rules.”
Ben Hurlbut, a bioethicist at Arizona State University, agrees.
“There was a time when this was considered religious,” he said. “But since it is the ultimate summit, there has been a change from asking ‘whether’ to asking about how.”
It was too easy to shoot, some ethicists say
Hurlbut and other scientists also say he didn’t fully come to terms with the high-pressure environment of biomedical research that they say encouraged him to do what he did.
“It’s just easier to condemn yourself and say all the bad things about yourself, and you should avoid it forever as it happens. Not considering what happened and why it fosters a kind of thoughtlessness, and I would say recklessness,” Hurlbut says.
Critics say that what happened was unnecessarily dangerous. It might, they fear, encourage others to try to make babies more cared for, at a time when public experts have never been more skeptical of scientific experts.
“We’ve seen a sense in recent years that experts have taken on too big a role and tried to run in our day-to-day life unequally,” says Hank Greely, a long-time Stanford University bioethicist. But whether or not genetic modifications are hereditary is allowed it is “ultimately a decision for societies, not a decision for science.”
A new lab in Beijing
Meanwhile, Jiankui himself seems to be trying to rehabilitate himself after serving a three-year prison sentence. He has set up a new lab in Beijing, promises to develop new gene-therapies for diseases like muscular dystrophy, gives scientific presentations and tries to raise money.
He is not looking forward to joining the London summit this week, and he is no longer talking about creating gene-cut babies. However, his activities resonate in the scientific and bioethical communities. He declined an NPR interview request. But the conversation with the newly published The guard the only regret he mentioned was in moving too fast.
“It concerns me,” says Lovell-Badge. “I wonder if I can practice science again. It just scares me.”
“That made it worse,” said Dr. Kiran Musunuru, a professor of medicine at the University of Pennsylvania. “The patient should not be in the place anyway. It has simply proven itself.”
Lovell-Badge and other top authors’ criticisms that scientists have gene-edited babies are inevitable, and this week’s conference agenda includes a brief discussion of the ethical and social hurdles that remain in this field of study.
The top leaders say that Friday will be the last day of the meeting to be dedicated to genetic modifications that can be passed down through generations; Panelists will include scientists on the line as well as a wide array of watchdog groups, patient advocates, bioethicists, sociologists and others.
The organizers of the conference say they have good reasons for the first two parts of the meeting to deal with the use of gene-editing people who have already been born.
“It’s a great opportunity to hear about what’s happening in the field, which has the greatest potential to improve people’s health,” said R. Alta Charo, an emeritus professor of law and bioethics at the University of Wisconsin, who helped organize the summit. .
Issues of equity have moved center stage
However, current treatments raise their own ethical concerns, including issues of equity. Will current and upcoming therapies be widely available given how expensive and technically complex data can be to create and manage?
“We’re not leaving the conversation about editing the hereditary genome, but we’re trying to shift some of that focus,” says Francoise Baylis, a bioethicist who recently retired from Dalhousie University in Canada and helped plan the meeting. “The really big issue in this context is cost, because we’ve seen gene-therapy come on the market with prices in the tens of thousands of dollars. That’s not affordable to the average person.”
Availability of gene-therapy treatments in lower-income countries should be the focus of concern, Baylis says.
“We’re asking where are people going to be most helpful,” he said, “and do they have access?”
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