The disgraced scientist said that the editing of human embryos should be banned
International Genome Editing Summit in China on Ethics and Regulatory Issues: He Jiankui’s Case for Three Live Babies Revisited
It will be impossible to shake the shadow cast by the previous summit, even though it is a promising future. The meeting convened just a few hours after the announcement by He Jiankui that he had edited the genomes of three live babies. He was sentenced to three years in jail for violating China’s laws on medical experiments.
“This meeting has been very disappointing, notably the failure of He Jiankui to answer any questions,” says Robin Lovell-Badge, a developmental biologist at the Francis Crick Institute in London, who attended the event.
A publicity stunt such as today shows he doesn’t have much credibility in the eyes of his peers according to an anthropologist.
He was not comfortable discussing his past work before the event. He said he is not ready to speak about his experience in the last 3 years. He also said he would no longer attend the University of Oxford in March for a series of interviews with Kirksey, and said that he would not be attending an international genome editing summit at the Francis Crick Institute, where researchers will discuss the ethics of germline editing, also planned for March.
Kirksey did not comment on the Oxford interviews but said he needs to clarify details about his past experiments. In 2018, the world learned that He had used CRISPR–Cas9 to edit a gene known as CCR5, which encodes an HIV co-receptor, with the goal of making the children resistant to the virus. Two babies were born to separate parents after the embryo was implanted. The parents had agreed to the treatment because the fathers were HIV-positive and the mothers were HIV-negative.
He’s previous work is unknown if it succeeded or left the children with side effects. Kirksey doesn’t believe in He’s future scientific plans.
Meanwhile, He Jiankui appears to be trying to rehabilitate himself after serving his three-year prison sentence. He set up a new lab in Beijing and is trying to raise money by promising to create new treatments for diseases like muscular dystrophy.
The weekend event was organized by the BioGovernance Commons initiative, monthly online meetings on ethical and regulatory issues between academics in China and thoseacross Europe, North America and Asia, and was hosted by the University of Kent. More than 80 researchers from 13 countries attended virtually, and He, together with some 20 academics and students, were at a venue in Wuhan.
People who attended the talk were disappointed. “It bordered on being insulting to the conference organizers and the participants to have used up the time with details and information that were not relevant,” says Françoise Baylis, a bioethicist and professor emerita at Dalhousie University in Nova Scotia, Canada. Baylis said He gave little information about his previous and current research endeavours.
Anna Lisa Ahlers, a social scientist and China studies scholar at the Max Planck Institute for the History of Science in Berlin, commended He on agreeing to speak to the group but says his presentation fell short of scientists’ expectations. “From his talk, I would have gotten the impression that he is a salesman.”
Vaccine manufacturing in the global south will require the same delivery systems for gene-editing treatments of cancer and COVID-19 in low- and middle-income countries
In recent years, scientists have produced new evidence about the risks and possible shortcomings of gene-editing, while also developing more sophisticated techniques that could be safer and more precise.
Doctors have made advances using CRISPR to try 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 influenced by genetics.
But those current treatments raise their own ethical concerns — including questions of equity. Will the the current and coming gene therapies be widely available, given how expensive and technologically complicated they can be to create and administer?
A development that could be helpful in low- and middle-income countries is expansion of vaccine-manufacturing capacity in the global south. Some mRNA vaccines against COVID-19 rely on a lipid nanoparticle to shield the mRNA strand and help it to penetrate cell membranes. Musunuru thinks that genome-editing therapies could potentially use the same delivery systems. He says that if it hadn’t been for the flu, we wouldn’t be where we are. If you asked me five years ago if we could do things today, I would have said no.
A man who didn’t kill himself accidentally: The danger of safe genetic modification of human embryos for the girls’ protection against the HIV that causes AIDS
He said he did it because he wanted the girls to be protected from the HIV that causes AIDS. The girls’ father was HIV-positive. But his announcement was immediately condemned as irresponsible human experimentation. Far too little research had been done, critics said, to know if altering the genetics of embryos in this way was safe. He ultimately was sentenced by a Chinese court to three years in prison for violating medical regulations.
“A lot has happened over the last five years. It’s been a busy period,” says Robin Lovell-Badge from the Francis Crick Institute in London, who led the committee convening the new summit.
“There are more than 10,000 single genetic mutations that collectively affect probably hundreds of million of people around the world,” says Shoukhrat Mitalipov, a biologist at the Oregon Health and Science University in Portland who’s been trying to find ways to safely gene-edit human embryos. “We could help a lot of people.”
That lack of reckoning with what happened could be dangerous, critics say. It could, they fear, encourage others to try make more gene-edited babies, at a time when the public may never have been more skeptical about scientific experts.
“We have seen in recent years a sense that the experts have taken on too big a role and that they have tried to run roughshod over our our day-to day-lives,” says Hank Greely, a longtime Stanford University bioethicist. But whether or not inheritable genetic modifications should be allowed is “ultimately a decision for societies and not a decision for science.”
Despite those concerns, some critics say the debate over the last five years has shifted from whether a prohibition on inheritable genetic modifications should ever be lifted to what technical hurdles need to be overcome to do it safely — and which diseases doctors might try to eradicate.
The whole scientific community heaved a sigh of relief when they were told to be more careful. The man has exceeded the limits. He’s clearly outside the limits. And therefore everything else is now open for grabs. And therefore the problem before us now is to make sure that we lay out the guidelines and the rules.'”
“There was a time when this was considered taboo,” he says. “But since the last summit, there’s been a shift from asking the question of ‘whether’ to asking the question of ‘how.’ “
Source: https://www.npr.org/sections/health-shots/2023/03/06/1158705095/genome-summit-gene-editing-ethics-crspr
What He Did and Why He Shouldn’t Be Doped With: Scientific Critics and Medical Bioethics Against Genetic Editing
The scientists have failed to fully come to terms with the high-pressure environment of the research that they say encouraged He to do what he did.
“It just feels easier to condemn He and say all bad resides in his person and he should be ostracized forever as we proceed apace. Not reckoning with what happened and why fosters a certain thoughtlessness, and I would say recklessness,” Hurlbut says.
“What he did was atrocious,” says Dr. Kiran Musunuru, a professor of medicine at the University of Pennsylvania. He should not be near a patient again. He’s proven himself to be utterly unqualified.”
Lovell-Badge and other organizers of the summit dispute criticisms that scientists are assuming gene-edited babies are inevitable and that the agenda for this week’s conference short-changes a debate about the ethical and societal landmines that remain in this field of study.
Summit leaders say they will dedicate the final day of the meeting to genetic modifications that can be passed down through generations, and panel participants will include scientists, patient advocates, bioethicists, sociologists and others.
Conference organizers say they have good reasons for focusing the first two-thirds of the meeting on the use of gene-editing to treat people who have already been born.
“The summit is a chance to really hear about what’s happening in the field that has the greatest potential for improving human health,” says R. Alta Charo, a professor emerta of law and bioethics from the University of Wisconsin, who helped organize the summit.