The Complicated Ethics of Gene Editing

Jack Crosbie
JULY 20, 2018
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The Future of Gene Editing

Make no mistake: Gene-editing technology is here. Public and private labs across the country are throwing money and resources into genetic research and CRISPR trials, and it’s inevitable that, eventually, many of the changes that critics worry about will become possible. But that doesn’t mean this scientific evolution has to play out the way that Darnovsky and others fear.

CRISPR technology can be used both for germline editing and somatic editing, which refers to changing the genes of living cells in a fully formed organism to fight cancer or genetic disease or to provide other enhancements.

Somatic gene editing with CRISPR most recently played a semiaccurate role in Dwayne Johnson’s summer blockbuster “Rampage,” in which Johnson’s gorilla friend is juiced up with edited genes to become enormous and angry, and a gigantic wolf grows bat wings. This sort of Frankenstein-like power is not one of the chief concerns of gene-editing opponents, although Chinese researchers have managed to make several species of dogs extremely muscular. In humans, somatic gene editing has the potential to cure or treat hundreds, if not thousands, of diseases and conditions.

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Germline and somatic editing are being widely researched in both humans and animals despite the ongoing debate. Even so, in 2015, the National Institutes of Health (NIH), a major government source of funding for scientific trials, announced that it would not fund germline gene-editing experiments on human embryos.

“The concept of altering the human germline in embryos for clinical purposes has been debated over many years from many different perspectives and has been viewed almost universally as a line that should not be crossed,” NIH Director Francis S. Collins, M.D., Ph.D., wrote in a statement at the time. “Advances in technology have given us an elegant new way of carrying out genome editing, but the strong arguments against engaging in this activity remain. These include the serious and unquantifiable safety issues, ethical issues presented by altering the germline in a way that affects the next generation without their consent and a current lack of compelling medical applications justifying the use of CRISPR/Cas9 in embryos.”

Germline editing of human embryos is legal but must be privately funded, a regulation that has been on the books well before CRISPR became prominent: The 1996 Dickey-Wicker Amendment prohibits the creation or destruction of human embryos during any research that uses federal funding. Other countries, such as the U.K. and China, have less restrictive laws: Chinese researchers reportedly used CRISPR to genetically modify human embryos as far back as 2015.

Still, experts say that it’s unlikely germline-editing techniques will make it into a clinical setting in the near future. Sam Sternberg, Ph.D., is an assistant professor at Columbia University who did his doctorate under Jennifer Doudna, one of the first scientists to propose that CRISPR could be used for gene editing. Sternberg says that modern research efforts in the U.S. are largely focused on somatic editing rather than germline editing, and even those studies are in their infancy.

“We don’t even know how well CRISPR is going to work as a way to treat disease in living patients, so it’s really too early to think about doing this clinically in embryos,” Sternberg says.

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CRISPR technology is not without risks, and with a scarcity of human trials, it’s still too early to tell how soon they’ll be clinically viable. In June, two studies linked CRISPR treatments with an increased risk for cancer in edited cells. This isn’t necessarily a deal breaker for the technology — it’s more of a risk to study or an eventual problem to fix — but findings like it will change the ethical risk calculations for doctors who are deciding whether to prescribe a somatic gene-editing procedure in the future. And Darnovsky says we can expect more side effects of gene editing down the line.

“We are at a very early stage of our understanding of how changing one genetic sequence might have biological and health consequences,” she says. “We just learned how to read the human genome a few years ago. If we try to rewrite it now, to rewrite the code, we’re likely to have some bugs.”

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