OSTON — While lacking the costuming of Comic-Con or revelry of SantaCon, CRISPR’s second annual geek-out dealt with a concept weightier than superheroes or public drunkenness: How should society deal with a technology that can literally reshape the world?
CRISPRcon brought hundreds of academics, industry scientists, and public health officials to Boston this week to answer just that question, moving past the beaker-and-pipette specifics of gene-editing to tackle the ethical, cultural, and democratic implications of science’s favorite new toy.
The event runs through Tuesday. Here are four things we learned on day one.
The ethics of genome-editing is still an open question
If you get a bunch of people in a room to talk about gene editing, there’s one topic guaranteed to come up: designer babies.
“That’s something we’re far away from,” said Feng Zhang, a scientist at the Broad Institute and a CRISPR pioneer. “Decades. Maybe longer.”
Even if he’s right, his scientific colleagues and fellow members of the human race saw no reason to delay the ethical debate about custom-made human life. At CRISRPcon, attendees were abuzz with questions biological and theological alike.
When does treating disease become genetic enhancement? It’s one thing to tinker with the genes behind muscle growth in the name of warding off muscular dystrophy, but who’s going to stop scientists from tugging at the same genes to craft a neonatal superathlete?
And did anyone think to ask the baby?
“People say it’s wrong to modify the genome of a baby because they can’t consent to it,” said Anna Everette of the New York Academy of Sciences. “But the counterpoint is that they didn’t consent to being conceived.”
Dawn Sinclair Shapiro, a filmmaker whose documentary “The State of Eugenics” aired on PBS last year, said there’s an ugly history of scientific misunderstanding being weaponized to the detriment of society. And CRISPR, in the wrong hands, could become a tool of oppression.
“As you saw with the eugenics movement of the previous century, you had sterilization policies based on faulty science,” Sinclair Shapiro said. “And if you watched the Facebook and Google hearings, it’s clear that our elected officials are not equipped with the background and expertise to ask the right questions.”
The CRISPR patent battle’s almost over
With the Broad Institute and University of California, Berkeley, at war over just who invented CRISPR gene-editing, who should you call if you’re looking for a license?
“People have done it from either or from both, but a lot of people are waiting to see how that battle resolves,” said Katherine Miller, an intellectual property attorney at the law firm Cooley.
The protracted patent squabble is “not really holding up the work” in gene-editing labs around the world, Miller said. “Hundreds and hundreds” of patent applications have launched since the early days of CRISPR, each claiming a narrow improvement on the existing IP that, theoretically, will put each innovator in the clear when it comes to future legal trouble, she said.
The U.S. Court of Appeals for the Federal Circuit is expected to rule in the dispute between Berkeley and the Broad between now and the end of the summer.
That won’t put CRISPR attorneys out of business: If you signed a license agreement with the losing party, you’ll need to call your lawyer and start negotiating with the winner, Miller said.
Scientists are mindful of CRISPR colonialism
Among CRISPR’s many dazzling applications is the promise of rewiring animals to eradicate infectious disease or save an endangered species. It sounds great on paper — edit a mouse, tinker with a tree, save a community — but the realities of culture make it infinitely more complicated.
Delphine Thizy works at a not-for-profit called Target Malaria, and her job is to educate communities in Africa about a CRISPR-powered idea that could combat the disease. The plan is to use the technology known as gene drive to weed out the mosquitoes responsible for spreading malaria.
The only way it can work is with the consent of the villages that would be most affect, and getting that consent has been a months-long process of translation and cultural adaptation, she said.
The stakes are massive, said MIT scientist Kevin Esvelt. If gene editors make an early misstep — whether scientific, ethical, or cultural — they could add years to the already lengthy process of advancing science.
“Gene therapy was set back by a decade by the first death in a clinical trial,” Esvelt said. “As the person who first told the world what a CRISPR gene drive could do, I feel personally morally responsible for all that comes of this technology.”
‘Democratization’ doesn’t mean the same thing to everyone
Listening to Esvelt talk about handing over control of scientific research to the communities it would affect, “I heard a crinkle in the room,” said Antonio Cosme, an urban farmer and community organizer from Detroit. To him, following through on that promise would require the powers that be in academia to step down from their ivory towers, accept some humility, and relinquish control to people without terminal degrees — something scientists have been loath to do in the past.
“My question is: Is democratization of this technology something you all really want?” Cosme said to an audience of scientists. “It’s not a term we should be using lightly. I don’t think it should be a window dressing for community relations.”
Then there’s the other definition of “democratization,” the one that puts gene-editing technology in the hands of any would-be scientist with a lab bench and a library card.
The ease and cost-effectiveness of CRISPR has inspired a generation of so-called citizen scientists.
The vast majority of people doing CRISPR research outside of academic institutions are on the up-and-up when it comes to research ethics, said Ellen Jorgensen, founder of the nonprofit Biotech Without Borders. But the most famous biohackers are Josiah Zayner, who CRISPR’d himself on YouTube, and the late Aaron Traywick, who injected himself with homemade vaccine — “two incidents that unfortunately were conflated with the community of citizen scientists who do biotech,” Jorgensen said.
“Those two things are examples of individuals that are operating outside what everyone else in the community would consider normal ethical behavior and yet they’ve been conflated with anyone who’s doing biotech outside of an institution, and that’s really unfortunate,” she said. “That’s really my concern: That people who are performance artists or who are grandstanding for some economic reason will cause harm by getting people to follow their example.”