Last month, Chinese national He Jiankui flouted a vigorous scientific debate when he told a room full of scientists that he had manipulated the embryos of Chinese twins, using Crispr, and made one resistant to their father’s HIV. He announced to the group that the twins of the experiment had already been born.
The big reveal was ethically dubious at best. He never went through proper channels to get his experiment approved. The scientist is being condemned by his contemporaries for ignoring universally respected protocol and forgoing peer research. In The Washington Post, Eileen Hunt Botting wrote that He’s experiment had “no moral or scientific justification, given that the medical profession can successfully prevent fathers from transmitting HIV without genetic engineering.” Botting went on to compare He’s experiment to popular science fiction: “However extreme their scenarios, both ‘Gattaca’ and ‘Frankenstein’ remind us that all children are vulnerable to discrimination based on factors beyond their control—including circumstances shaped by artificial reproductive technology.”
Collier Meyerson is an Ideas contributor at WIRED. She was awarded an Emmy for her work on MSNBC’s All In with Chris Hayes and two awards for her reporting from the National Association of Black Journalists. She is a contributing editor at New York Magazine, and maintains the Nobler Fellowship at The Nation Institute.
It’s easy to fear this kind of procedure: follow embryonic gene editing to its logical conclusion and we’ll end up with a society dramatically altered through eugenics, with generations of people engineered to fit a single vision of perfection. It’s an unequivocally scary prospect. (Also, those people would be boring in their uniformity, and no sane person wants a world full of cogs.)
When we think about genetic engineering, we tend to think in absolute terms—a black-and-white stance with a barrier that, once crossed, leads to the downfall of civilization as we know it. In reality, we make genetic decisions all the time, in ways that are already subtly altering the people who make up society. It might seem strange to group He’s experiment alongside the more common genetic procedures parents use to ensure their offspring don’t inherit diseases. Yet both exist within a system in which—generally—only the economically privileged are able to pay for treatment to alter the traits that their offspring will and won’t inherit. The danger isn’t in the procedure itself, but who has access to this type of medicine—and right now that group is limited to those who can pay.
Suspend your belief in moral absolutism for just a moment. There is a universe in which the eugenics He practiced are actually a good idea. When we think of scientific eugenics, like in the movies, it’s generally of the nonessential sort, the kind that will work to maintain western European standards of beauty or universal standards of good health—white babies with blue eyes, blond hair, and an ability to run 12 marathons a year. But what if the technology were used, in earnest, to create better outcomes for those with a proverbial leg down on the ladder of white supremacy?
The WIRED Guide to Crispr
In the United States, where black women disproportionately contract HIV, or in eastern and southern Africa, where according to UNICEF half the world’s population with HIV live, breeding immunity into the population could be a good thing. The same thing goes for other possibly deadly diseases like sickle cell anemia, which most severely affects black children.
In practice, use of these techniques is a lot grimmer. “The idea that [gene editing] could be rolled out in subsaharan Africa is a fantasy,” Hank Greely, a professor who specializes in the ethics of genetics at Stanford, told me. “The place where HIV is most prevalent is the place where people have the least access to medical care,” he said, explaining that for the foreseeable future the technology will cost a lot of money.
In other places in the world, these kinds of genetic enhancements are already a readily used option. Last year my friend Allison tested positive for the BRCA gene, a mutation that dramatically increases her risk of developing ovarian cancer, breast cancer, or both. When Allison got the test results, it was a hard time, but ultimately she was thankful for the information. Recently Allison and I were discussing whether she would consider using in vitro fertilization to prevent passing the gene onto her children (should she choose to have them).
As far as Allison knows, she doesn’t face fertility challenges, so there is no medical need for her to do in vitro. She would be electing to do something called preimplantation genetic diagnosis, a process that allows in vitro specialists to identify which embryos have BRCA and which don’t, and then only implant the ones that don’t.
My friend told me she doesn’t expect to determine the fate of her future child using in vitro. “I feel confident that, by the time I have kids who might be dealing with this, there will be other solutions,” she said over text. But if her insurance were to cover it, she said she’ll reconsider.
Skewed access to the kind of treatment Allison considered is already creating a tiered genetic system, according to Judith Daar, a law professor at UC Irvine and author of The New Eugenics. Aside from preimplantation genetic diagnosis, Daar told me that lack of access to IVF has revived early-20th-century eugenics ideas that some are better fit to reproduce than others. Current law and policy surrounding IVF—where some are given access to expensive treatments while, for others, they remain out of reach—are tantamount to a new eugenics, she says, because they enable demographic features likes socioeconomic status, race, ethnicity, marital status, sexual orientation, and disability to suppress access to reproductive technology.
Though it doesn’t involve manipulating embryos, we’ve already got a version of He’s vision right under our nose. Gene technology is, for the most part, geared toward those who have. It’s different, for sure—there is no editing, just eliminating embryos deemed undesirable. But traces of the same issue remain: Only some babies will benefit. How to universalize access is the real ethical pursuit.
Correction appended, 12/17/18, 9:35 PM EDT: This story has been updated to correct the spelling of Hank Greely’s name.