An international summit on human gene editing drew hundreds of people to Washington DC for three days this week, with many more joining online. The meeting, which wrapped up on Thursday, was convened by the scientific academies of the United States, the United Kingdom, and China. Its central issue: whether or not powerful new molecular engineering techniques should be used to create genetically modified children.
The summit was not designed to produce consensus among the participants, a mix of scientists, academics, ethicists and others, but its organizing committee released a statement at the end of the deliberations. Perhaps unsurprisingly, its conclusion was inconclusive.
The statement asserts that germline gene editing for human reproduction — that is, genetically altering sperm, eggs, or embryos and initiating a pregnancy with them — has not been shown to be safe or effective, and that for now “it would be irresponsible to proceed.” Nor should any such effort be made, it says, until “there is broad societal consensus about the appropriateness of the proposed application.”
But the statement explicitly leaves the door unlocked and open: “However, as scientific knowledge advances and societal views evolve, the clinical use of germline editing should be revisited on a regular basis.” In other words, the committee has kicked the can down the road.
This is disappointing to those who believe that creating genetically engineered children would be a terrible mistake. In my view, heritable genetic modification is by far the worst of several options for preventing the transmission of genetic diseases, since it would be extremely risky both biologically and socially. For these and related reasons, it has been prohibited by law in some 40 countries and by a binding Council of Europe treaty, the Convention on Human Rights and Biomedicine.
Several prominent scientists and biotech industry leaders attending the summit have made their skepticism about germline gene editing explicit. Eric Lander, who has spent his career working to develop genomic medicine, gave a detailed talk demonstrating that the overwhelming majority of people at risk of passing on a genetic disease can have healthy and genetically related children without it. The increasingly common technique of embryo screening and selection, known as pre-implantation genetic diagnosis (PGD), is now a fairly conventional add-on to in vitro fertilization. Lander argued that germline gene editing should not be seen as “the first, second, third or fourth resort” for would-be parents or for society at large. “To avoid most cases of genetic diseases,” he said, “the most important intervention would be ensuring access to genetic testing so carrier couples know they are at risk.”
Several biotech companies developing gene editing treatments for a range of diseases have also announced that they will have nothing to do with germline gene editing. Sangamo Biosciences CEO Edward Lanphier was the lead author of an article published in Nature back in March titled “Don’t Edit the Human Germline.” CRISPR Therapeutics and Intellia Therapeutics, two other key gene editing startups, issued a joint statement on the first day of the summit saying that both companies would refrain from “developing any clinical applications of germline gene editing.”
Unlike these stances, the organizing committee’s is equivocal. That is certainly preferable to the views of a few outliers like philosopher John Harris, who used his presentation at the summit to endorse gene editing as a human enhancement program that should be launched as soon as the technical wrinkles are ironed out. More worrying are the scientists, including some with a great deal of influence, who seem to downplay the biological risks and social dangers of germline gene editing, as well as the availability of options for healthy and genetically related children.
Typically, discussions of new biomedical technologies that are organized by scientists focus on technical questions about safety and effectiveness. But when the matter at hand is a technology that may literally reshape human beings and human society, ethical and social considerations cannot be ignored. The organizers of the just-concluded summit made a real effort to include speakers, including myself, whose expertise lies in social, policy, or ethical arenas.
Unfortunately, many perspectives from outside the scientific community were not fully represented, especially those from the public interest sector. We did not hear, for example, from advocates for disability rights, racial justice, reproductive rights and justice, the LGBTQ community, environmental protection, labor, or children’s welfare. Also missing were religious and artistic voices.
The organizers apparently took note of criticisms of these absences. They also acknowledged that the summit must be seen as just one step in a broader and more inclusive set of deliberations. Their concluding statement called for an ongoing forum that engages “a wide range of perspectives and expertise.” As bioethicist and committee member Francoise Baylis pointed out, it could have turned out differently. “It’s important that we’re not sitting here saying we’ve settled the matter,” she said.
The recognition that scientists alone can’t decide whether to deploy this society-altering technology is perhaps the summit’s most positive outcome. Already, more and more non-scientists are becoming aware of what’s at stake for all of us, and realizing that germline gene editing is a social and political matter, not just a scientific one.
Marcy Darnovsky, PhD, is executive director of the Center for Genetics and Society. More information can be found in an open letter calling for prohibition of germline gene editing that has been signed by some 175 invited scholars and public interest advocates, and in a new report from the Center for Genetics and Society and Friends of the Earth, Extreme Human Genetic Engineering: Reclaiming Emerging Biotechnologies for the Common Good.
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