Experts weigh medical advances in gene-editing with ethical dilemmas
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AFP via Getty Images
Biophysicist He Jiankui addressed the last international summit on human genome editing in Hong Kong in 2018. His experiments in altering the genetic makeup of human embryos was widely condemned by scientists and ethicists at the time, and still casts a long shadow over this week's summit in London.
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.
The last time the world's scientists gathered to debate the pros and cons of gene-editing in Hong Kong in late 2018 He Jiankui, a biophysicist and researcher at Southern University of Science and Technology in Shenzhen, China, shocked his audience with a bombshell announcement. He had created the first gene-edited babies, he told the crowd twin girls born from embryos he had modified using the gene-editing technique CRISPR.
He, who had trained at Rice University and Stanford, said he did it in hopes of protecting the girls from getting infected with the virus 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
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He ultimately was sentenced by a Chinese court to three years in prison for violating medical regulations.
In the more than four years since He's stunning announcement, scientists have continued to hone their gene-editing powers.
"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.
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
and cancer that are even more common and influenced by genetics.
Isaac Lawrence / AFP via Getty Images
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AFP via Getty Images
Jennifer Doudna, a biochemist at the University of California, Berkeley and one of the pioneers in the discovery and use of CRISPR, speaking with reporters at the scientific summit in Hong Kong in 2018. Despite exciting advances, genome-editing still faces technical and ethical challenges, she says.
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.
"We're at an exciting moment for sure with genome-editing," says Jennifer Doudna at the University of California, Berkeley, who helped discover CRISPR. "At the same time, we certainly have challenges."
"We could help a lot of people"
One big remaining challenge and ethical question is whether scientists should ever again try to make gene-edited babies by modifying the DNA in human sperm, eggs or embryos. Such techniques, if successful could help families that have been plagued by devastating genetic disorders.
"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."
But the fear is a mistake could create new genetic diseases that could then be passed down for generations. Some scientists are also concerned about opening a slippery slope to "designer babies" children whose parents try to
pick and choose their traits.
"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. "And they would be unfortunately I think considered an enhanced race a better group of people. And I think that could really just super-charge the inequities we already have in our world."
The debate among many scientists seems to have shifted to how to edit a genome safely
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.
As evidence of that, the critics point to the fact that the subject of genetically modifying embryos, sperm or eggs to engineer modifications that would then be passed along to every subsequent generation is the focus of only one of three days of this summit the first such conference since the CRISPR babies were announced.
"This is quite an ironic outcome," says Sheila Jasanoff is a professor of science and technology studies at Harvard's Kennedy School of Government.
"Instead of rejuvenating the calls to say: 'We should be much more careful,' " Jasanoff says, "it was as if the whole scientific community heaved a kind of sigh of relief and said: 'Well, look, of course there are limits. This guy has transgressed 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.'"
Monday, March 6, 2023 at 10:00 am