Biophysics and medicine: what will we learn from the 2018 London summit on gene editing? A comment by He Jiankui and Eben Kirksey

Despite that tantalizing future, it will be impossible to shake the shadow cast by the previous summit, in 2018. That meeting convened just a day after biophysicist He Jiankui announced that he had edited the genomes of three embryos that developed into living babies. The stunt ultimately earned him three years in prison for breaking 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.

According to Eben Kirksey, medical anthropologist at the University of Oxford, a publicity stunt like today shows he doesn’t have credibility with his peers.

He’s not expected to join the London summit this week, and is no longer talking about creating more gene-edited babies. The activities of his have raised alarm in the scientific community. He declined NPR’s request for an interview. He mentioned in the interview with The Guardian that he regretted moving too fast.

Kirksey declined to comment on the status of the Oxford interviews, but says He needs to clarify details about the circumstances surrounding 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. He gave birth to twins and another baby who was separated from their parents. The parents had agreed to the treatment because the fathers were HIV-positive and the mothers were HIV-negative.

The children were free from the side effects of his previous work. Kirksey is not convinced about He’s future scientific plans.

He has revealed on social media that he has set up a not-for-profit research lab in Beijing with the aim of developing affordable and accessible therapies for diseases such as Duchenne Muscular Dystrophy.

The University of Kent hosted a weekend event in which academics from China and other parts of Asia met with academics from Europe and North America to discuss ethical and regulatory issues. He was with some 20 academics and students who attended a venue in Wuhan, where more than 80 people from 13 countries attended virtually.

The researchers who attended the talk weren’t happy. “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 that he didn’t give any information about his previous or current research.

He was praised by Anna Lisa Ahlers for agreeing to speak to the group but she believed his presentation did not meet expectations. I would have thought he was a salesman after listening to his talk.

The Third International Summit on Human Genome Editing (CAMEH2015): Hope, Challenges, Opportunities, and Pitfalls for Low- and Middle-Income Countries

Robin Lovell-Badge, a reproductive biologists at the Francis Crick Institute in London is chairing the summit, and she says technological aspects of using genome editing for reproductive purposes have not changed since then. “It’s still an unsafe technique,” he says, echoing a widespread scientific consensus that genome-editing technology is not ready for use in human embryos.

Hundreds of scientists, doctors, bioethicists, patients, and others started gathering in London Monday for the Third International Summit on Human Genome Editing. The summit this week will debate and possibly issue recommendations about the thorny issues raised by powerful new gene-editing technologies.

But prices for existing gene therapies are rocketing, which is making researchers worry that genome-editing therapies will be similarly unaffordable for much of the world. In November the FDA approved a gene therapy for haemophilia that has an average price of US$5 million per treatment. “There’s a lot of hope, but the hope has to be balanced a bit with the way things are going,” says Lovell-Badge.

One development that could facilitate access in low- and middle-income countries is the effort to expand vaccine-manufacturing capacity in the global south. Some vaccines rely on aZYME to help the vaccine penetrate the cell walls. It is possible that the same technology could be used for genome-editing therapies. “If it hadn’t been for the pandemic, we wouldn’t be where we are,” he says. If you asked me five years ago if we could do the things we can do now, I would have said that is not possible.

Why he did it to protect the girls from the AIDS virus? A response to the Japanese prime minister’s warning against gene-editing embryos

He said he did it because he wanted to protect the girls from the AIDS virus. The 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 was sentenced by the 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.

Critics say that there isn’t much of a response to what happened. 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.

“If we were to allow parents to genetically modify their children, we would be creating new groups of people who are different from each other biologically and some would have been modified in ways that are supposed to enhance them,” says Marcy Darnovsky heads the Center for Genetics and Society in San Francisco. The enhanced race would be a better group of people. And I think that could really just super-charge the inequities we already have in our world.”

Critics argue that the subject of modified eggs, sperm and embryos, which would be passed on to future generations in the event of a crash, is only part of the three day summit.

“It was not as if the whole scientific community heaved a sigh of relief, because they knew that there are limits,” Jasanoff says. This guy has transgressed the limits. He’s clearly outside the limits. And therefore everything else is now open for grabs. To make sure that we lay out the rules and guidelines is the problem before us.

“There was a time when this was considered taboo,” he says. Since the last summit, there has been a shift from asking if it’s possible to ask how.

Source: https://www.npr.org/sections/health-shots/2023/03/06/1158705095/genome-summit-gene-editing-ethics-crspr

A Conversation with Hurlbut on “Gene Editing and Weak Genetic Manipulation,” a Times of Descendants, Physicists, and Social Scientists

Hurlbut has said that scientists have failed to come to terms with the high-pressure environment of research, which encouraged He to do what he did.

It feels less risky to condemn him and say that all bad exists in his own person as we move forward. He says that recklessness and not knowing why fosters certain thoughtlessness, are the things he would call it.

The professor of medicine at the University of Pennsylvania says that he did not appreciate what he did. “He shouldn’t be allowed anywhere 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.

The last day of the meeting will be dedicated to genetic modifications that can be passed down through generations, with scientists, patient advocates, bioethicists, sociologists and others joining the panel.

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.