The independent news organization of Duke University

Professors discuss the ethics of gene editing at inaugural symposium

Two hundred years ago, Mary Shelley's novel "Frankenstein" warned about the dangers of unchecked scientific exploration. At a panel Friday, three Duke faculty debated whether society today is still heeding Shelley's lessons.

Misha Angrist, associate professor of the practice in the Social Science Research Institute, Charles Gersbach, Rooney Family associate professor of biomedical engineering, and Arti Rai, Elvin R. Latty professor of law, made up the panel, which was held as part of the inaugural Huang Fellows Symposium. The theme for the symposium was the intersection of scientific research and public practice. 

The three professors centered their discussion around CRISPR technologies, which can make direct edits to individuals' DNA. Gersbach, whose lab at Duke develops and experiments with CRISPR technology, explained that its most widespread application is treating human disease. 

"Everything that's being done in that space right now is what is referred to as somatic cell gene editing, meaning that it is only modifying cells in the body that are affected by the disease—or at least that's the intention," he said. "So if you have an immune disease, they could go in and modify immune cells. If you have a liver disease, they could go in and modify liver cells. And it's isolated to those cells in that tissue in that individual."

Rai, who studies intellectual property and patent law related to biotechnology, said that several companies have already brought to market other forms of gene-editing technology for treating disease—a class of treatments referred to as gene therapy. In 2017, for instance, the Food and Drug Administration approved a breakthrough form of gene therapy from Spark Therapeutics which treats a rare form of congenital blindness.

Gerschbach and Rai agreed that the scientific community has largely been careful with how it studies technologies like CRISPR and applies them in humans. 

"In the CRISPR field, people are scared to death to avoid a Jesse Gelsinger incident and set everyone back," Gerschbach said, referring to a patient whose death from gene therapy in 1999 resulted in major public backlash. "I work closely with a lot of leading gene editing companies and watching how safe they're being, to me, is reassuring."

What is more concerning are incidents where individuals tried using CRISPR editing on themselves, noted Angrist, who researches the social implications of genomic technologies. Last October, biohacker Josiah Zayner treated himself with a DIY kit, live streaming his actions in a video that has since garnered 120,000 views. 

Angrist said he attended a class in New York City that was meant to inform the public about CRISPR by allowing students to perform experiments on samples in a laboratory. Despite warning attendees against trying CRISPR on themselves, the leader of that school has still faced controversy over his work.

"He's trying, with his lab, to set the standard for biosafety and has regular contact with the FBI, yet all anybody wants to ask is, 'Are you bringing people in to take your classes so that they can learn how to edit themselves,"' he said. "I would hate to see efforts like that get tarred with this bad actor push."

Although gene editing on somatic cells is widely accepted as an ethically sound practice, there is significantly more controversy around germline editing, Gersbach noted. 

"[Germline gene editing] involves making changes to gene sequences in germ cells like egg and sperm or single cell embryos," he said. "The issue there is that if that cell or fertilized embryo moves on to develop into a whole organism, every cell in that organism will be modified. Not only things that were intended to happen but anything that's unintended will now exist in all of those cells." 

"And furthermore," he continued, "any progeny from that human—because the germ cells in that person are also modified—will get those genetic modifications."

Gersbach added that around 2015, leading CRISPR researchers called for a voluntary moratorium on editing reproductive cells after several groups in China released reports in which they had edited human embryos. However, last year, a lab at Oregon Health and Science University became the first group in the United States to have similarly modified human embryos. 

Germline editing—whether with CRISPR or other methods—primarily brings up two ethical concerns, Rai explained. The first is about cost, since these therapies have been expensive to research and bring to market.

"All of these therapies are going to be incredibly expensive, and how to determine who gets them and who doesn't is going to be an ethical issue in and of itself," she said. 

Rai added that the question of germline editing will get tied into abortion politics, as was the case during the national debate over stem cell ethics. 

"I think the FDA, regardless of [political] administration, will be very weary of approving germline modifications, in part because of abortion politics," she said.

The panelists also discussed Silicon Valley startups seeking to extend life and reduce the symptoms of aging.

Angrist explained that anti-aging efforts generally fall under two camps—attempting to repair broken genes and reduce disease prevalence or working to achieve immortality.

"I'm happy to entertain the former idea, of how we can improve public health, how we can use gene editing and other technology to make the population healthier," he said. "I'm less interested in sort of the Peter Thiel idea—how can I extend my life so that I can achieve world domination?"

Rai noted that the prevalent attitude in Silicon Valley of "move fast and break things" has established a bubble in which the technologists involved may not yet realize the ramifications of their research.

"We, even at Duke, live in a bubble," she said. "We should keep in mind that most people do not live in [Silicon Valley] circumstances. Many people are struggling with [issues like] opioid abuse, and the life expectancy in the United States is not increasing in general, so there are huge distributional issues here. We would be remiss if we didn't keep those in mind."

Comments