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Report lays out a road map for human gene editing

Experts on an international commission are saying it’s too early to tweak the human genome for future generations, but they’re also pointing to the first genetic targets to be tweaked.

The experts’ report, issued today, comes in response to the uproar that arose in 2018 over claims that Chinese researchers had edited the genomes of twin babies in an attempt to reduce their vulnerability to the HIV virus.

Those claims sparked a blizzard of questions about the ethics, legality and efficacy of the experiment. It also sparked efforts to lay down guidelines for the use of recently developed gene-editing tools such as CRISPR to make changes in the human genome that could be passed down to future generations.

In today’s report — prepared with the backing of the National Academy of Medicine, the National Academy of Sciences and Britain’s Royal Society — the 18-member commission says researchers will have to demonstrate that precise genomic changes can be made reliably without introducing unwanted changes. The commission also says no current technologies, including CRISPR, can satisfy that requirement.

Once the state of the art gets to that point, heritable human genome editing should initially be limited to the prevention of serious diseases that are caused by a single gene, the report says. Examples include cystic fibrosis, thalassemia, sickle cell anemia and Tay-Sachs disease.

Even in those cases, gene-editing therapy should be reserved for cases where parents who have a known risk for passing on such a disease have virtually no other options.

“Any initial uses of HHGE [heritable human genome editing] should proceed incrementally and cautiously, and provide the most favorable balance of potential benefits and harms,” Rockefeller University President Richard Lifton, the panel’s co-chair, said in a news release.

Today’s report will feed into the work of a different advisory panel at the World Health Organization, which is drawing up recommendations for governance mechanism that would apply to heritable as well as non-heritable genome editing research and clinical uses.

Those recommendations are due to be issued later this year. It’ll be up to individual countries to incorporate the guidelines as they draw up gene-editing regulations. Today’s report calls for the creation of an independent International Scientific Advisory Panel to track developments in the gene-editing field, as well as an international body to provide further guidance on regulating the field.

Francis Collins, the longtime director of the National Institutes of Health, gave the report his thumbs-up in a tweet:

By Alan Boyle

Mastermind of Cosmic Log, contributing editor at GeekWire, author of "The Case for Pluto: How a Little Planet Made a Big Difference," president of the Council for the Advancement of Science Writing. Check out "About Alan Boyle" for more fun facts.

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