Gene editing must never be used to create “designer babies” with enhanced abilities, the director of the National Institutes of Health (NIH) told a gathering of top scientists on Tuesday.
More provocatively, he also said that science is not ready for the controversial new technology to be used to eliminate genetic diseases that are passed down from one generation to the next.
“We must be aware of the hubris that it would take for human beings to be so smart that we thought we had the ability and the ethical principles to do such a thing,” the NIH chief, Francis Collins, said. “Humility would be a very good principle to attach to any such discussion.”
Collins was addressing a prestigious committee of about two dozen legal and scientific experts gathered to discuss the ethics of gene editing — a new technology that grabbed the spotlight last year.
CRISPR/Cas9, the most famous of this suite of powerful new tools, enables scientists to locate and replace human genes with unprecedented ease and precision.
But the prospect of using the tool on egg and sperm cells — and therefore affecting the gene pool of future generations, known as the “germline” — has become a divisive issue.
CRISPR may one day offer parents with devastating inheritable diseases a chance to have disease-free children, but opponents argue that it is not yet clear how or if the technique will function in the chaotic biology of a rapidly developing embryo. Potentially, there would be no way to test it without the loss of new life. Also, some scientists are concerned about whether it is right to manipulate the genome of a future human without their consent.
Collins said that he was gung-ho about deploying CRISPR in adult cells, such as one team’s recent proposal to engineer a person’s blood cells to fight cancer. “I think we should be pushing that at maximum speed,” he told the group. “But germline — no.”
Collins’ comments underscore the NIH’s position — the agency announced last year that it will not fund research on editing in human embryos because of regulatory and ethical concerns. On a more personal level, Collins told BuzzFeed News that his misgivings are also influenced by religion.
“I do believe that humans are in a special way individuals and a species with a special relationship to God, and that requires of a great deal of humility about whether we are possessed of enough love and intelligence and wisdom to start manipulating our own species,” he said.
But Collins does not speak for all Christians. Following Collins’ remarks, Rev Ronald Cole-Turner, a professor of theology and ethics at the Pittsburgh Theological Seminary, told the committee that some Christian groups are open to gene editing in human embryos — if scientists can prove that it’s safe.
“It may come as a surprise to hear that Christian scholars and denominations have expressed cautious support for human germline modifications,” he said.
Some of the meeting’s scientific attendees also seemed surprised by Collins’ remarks.
Barry Coller, vice president for medical affairs and a professor at Rockefeller University, asked Collins if his opposition to germline editing would mellow if the only changes being made were to correct disease mutations, rather than to introduce new abilities.
“Clearly there’s a difference,” Collins said. If researchers were confident that the only changes would be returning the genome to a disease-free state with no ancillary effects, he said, then the “ethical issues there about modifying the future of humanity are greatly reduced.”
Gary Marchant, a professor of law and ethics at Arizona State University, asked Collins how he would respond to parents whose only option to have a healthy child was through editing at the embryo stage.
“I am supposing that such circumstances are extremely rare. I am not aware that any such couple has yet come forward who really wants to take advantage of this,” Collins responded. With only these hypothetical examples, he added, “we should not be proceeding with the gene editing of embryos.”
In December, the National Academy of Sciences and the National Academy of Medicine formed the Committee on Human Gene Editing to consider technical and ethical questions around the use of this new technology. Presentations to the committee on Tuesday, the fourth public call for comment, focused on genetics and race, and ethics and religion. The committee expects to publish a report of their recommendations by the end of the year.
“All of the decisions that we’re making around human gene editing are occurring in a context where we are using genetic technologies in new and often pernicious ways,” Alondra Nelson, professor of sociology and gender studies and dean of social science at Columbia University, told BuzzFeed News.
Nelson reminded the committee that past practices have antagonized some communities against new science. For example, the infamous 40-year long syphilis study conducted by the Tuskegee Institute, which initially recruited 600 black men under the guise of providing free health care, has left a lingering distrust of science among black Americans. Elsewhere, she described how the Havasupai Native American tribe donated samples for a diabetes study but then had to fight to stop researchers from studying their DNA to trace their genealogical roots without their consent.
Nelson stressed the importance of communicating the promise and limits of new technologies with nuance. “People engage with debates in more than a way of distrust,” she said.
A few months ago, Black Lives Matter activists were alarmed to find that police were collecting DNA swabs from them when they were arrested after a demonstration. “I think that we must be careful not to have a conversation that takes place in this hermetically sealed world that doesn’t have all these pressures on it,” Nelson told BuzzFeed News.
Committee member Keith Yamamoto, a professor at the University of California at San Francisco, similarly told BuzzFeed News that the report must not ignore issues of social justice.
“Enhancement runs the risk of exacerbating the distinctions between the haves and have nots because of access,” he said. “The question is: What does this group do, in being able to speak about these things. And I think it is essential that we do so.”