Ethical concerns temper optimism about gene-editing for human diseases
ARI SHAPIRO, HOST:
It's still far too premature to use powerful new technologies to edit genes that can be passed down from parents to their children. That's according to organizers of the Third International Summit on Human Genome Editing, which concluded today in London.
NPR health correspondent Rob Stein attended and joins us now. Rob, tell us about what happened at the summit and why it's important.
ROB STEIN, BYLINE: Yeah. So, Ari, it's the first time in five years that researchers, doctors, bioethicists from around the world have come together to debate the big questions being raised by new technologies that are letting scientists manipulate DNA in ways once thought unimaginable. At the last summit, a Chinese scientist shocked the world by announcing that he had used gene editing to create the first genetically modified babies - twin girls he had made from gene-edited embryos. That was denounced for many reasons, including that no one knew if it was safe. And that stunner kind of hung over this meeting like a huge shadow. Here's how Linda Partridge from The Royal Society put it on the opening day.
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LINDA PARTRIDGE: While the potential benefits of the technology are clear, so also is the potential for it to be misused.
STEIN: The fear is that someone could make a mistake and sort of mess up the human gene pool for generations and open the door to all kinds of dystopian fears about designer babies.
SHAPIRO: So how did the summit address those fears?
STEIN: Well, first of all, scientists presented the results of their latest experiments. And it became clear that they've quietly made big strides in the last five years, honing their gene-editing skills. On the one hand, they've discovered new evidence about just how unsafe it would be to try to make new gene-edited babies. The editing can simply make too many mistakes. But they've also made progress towards finding more precise ways to edit genes in human embryos, eggs and sperm. And there was a pretty intense debate today about the ethical pros and cons of someday doing that to potentially do things like eradicate thousands of terrible genetic diseases that have plagued families for generations or help infertile couples have genetically related children. And there was also a lot of talk about how doctors are starting to treat diseases in people who have already been born.
SHAPIRO: Tell us more about that. What kind of diseases?
STEIN: Yeah. So there's lots of progress using gene editing to treat diseases ranging from rare genetic ailments to more common illnesses like cancer and heart disease. In fact, the first gene-editing treatment could get approved this year to treat sickle cell disease. But that's also raising concerns that the treatment's too complicated and could be too expensive to get it to everyone who needs it.
SHAPIRO: In the end, what did the organizers say about all of this?
STEIN: Well, first of all, they stressed that making gene-editing therapies widely available must be a top priority. And second of all, they warned that it remains far too early to make any more genetically modified babies. Here's Robin Lovell-Badge from the Francis Crick Institute, who led the summit.
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ROBIN LOVELL-BADGE: Heritable human genome editing should not be used unless, at a minimum, it meets reasonable standards for safety and efficacy, is legally sanctioned and has been developed and tested under a system of rigorous oversight but is subject to responsible governance. At this time, these conditions have not been met.
SHAPIRO: Well, so what did you hear from people at the meeting after all that?
STEIN: Well, most of the attendees agreed with that statement, but some critics say it fell kind of short. Here's William Hurlbut, a bioethicist at Arizona State University (ph).
WILLIAM HURLBUT: We all know, you see a yellow light and sometimes you slow down and hit the brake and sometimes you hit the gas. And I think here we're hitting the gas.
STEIN: Hurlbut and others worry that there's been kind of a troubling shift in the debate from the big questions swirling around whether genetic modifications that can be passed on for generations should ever be done, to simply laying out the technical steps necessary to do it safely.
SHAPIRO: NPR health correspondent Rob Stein reporting from London there. Thanks, Rob.
STEIN: You bet, Ari.
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