A journalist who writes about reproductive technology and genetics responds to Nosipho Dumisa’s “Mpendulo: The Answer.”
In November, a Chinese scientist shocked the world when he announced he had created the first gene-edited babies, twin girls named Lulu and Nana. The New York Times said the act “set off a global firestorm.” Jennifer Doudna, the scientist who had pioneered the CRISPR tool that made the experiment possible, said she was “horrified” and “disgusted.” Even the normally reserved Atlantic science writer Ed Yong called the illegal act “galling” and wrote: “If you wanted to create the worst possible scenario for introducing the first gene-edited babies into the world, it is difficult to imagine how you could improve on this 15-part farce.” Those bullet points included everything from shoddy scientific workmanship to alleged lack of informed consent to uncertainty whether the new gene mutations (made to reduce the girls’ chances of developing HIV) could come back to haunt them later.
As shocking as it was, it wasn’t exactly surprising. For years, the public imagination has been captivated by the prospect of making “designer babies.” Of course, it wasn’t supposed to happen like this. Rather, it would be the result of thoughtful international scientific consensus—not a half-baked idea by a secretive scientist.
As with many mindboggling scientific advancements of past decades, it’s hard to know how to feel about it. The promise of preventing disease is tantalizing, despite what’s become ritual fearmongering about unleashing unknown consequences that will make humanity very, very sorry. In the meantime, we attempt to legislate. (Earlier this month, the World Health Organization created a committee to govern future genome editing.) We censure. We vow to do better. And, well, we wait.
In Nosipho Dumisa’s chilling short story “Mpendulo: The Answer,” the South African film writer-director dares to imagine what might happen if scientists actually tried to make embryos with perfect immune systems. The scary twist: They’d be made from synthetic stem cells, so they wouldn’t be technically human. “When the Chinese started making HIV-resistant gene-edited human embryos back in 2018, we knew we’d stumbled onto something big,” says a worker named Belinda at the fictitious (and cornily named) “Life Everlasting” program that was created in the wake of a global HIV-type pandemic. “Since the beginning of time, humans have been evolving with modern medicine for the better. We beat polio, we learned to transplant organs, we are now printing organs. But our genetics are our weakness.”
The story introduces us to two of the only known resulting babies—now–13-year-olds Mpendulo and Thomas—who were born in secret after the program was shuttered. Despite their non-human origins, the reader is comforted by evidence of their humanness: Mpendulo experiences the exquisite agony of a middle-school crush. She shows empathy by crying when her friend dies. She delights in tasting salted caramel ice cream for the first time. As for Thomas, he’s protective of his friend when a classmate hurts her on the soccer field (and potentially reveals her identity). But, the author hints, he might have a dark side: Did all that genetic tinkering unknowingly beget a dangerous violent trait?
But the story is also enlightening because it captures the visceral discomfort with new biological breakthroughs: the fear of being less human through exclusion and discrimination. Mpendulo constantly worries about being “found out” by her peers for being special and ostracized by her community. You only have to look at the history of reproductive technology to see we’ve been here before.
Ever since the first in-vitro fertilization baby, Louise Hay Brown, was born in 1978, fertility doctors have been accused of “playing God” and possibly weakening human connection. Babies would be made in the lab instead of the bedroom. Critics worried that parents who conceived babies with donor eggs or sperm wouldn’t bond with them the same way as babies who shared their genetic material. Or they’d only want eggs donated by Harvard women who were smarter than the rest of us.
If you’re old enough, you’ll remember when people were scared that the rise in sperm donors would lead to armies of single moms who “didn’t need men.” Then came speculation that men “wouldn’t need women” because they would be able to buy “mini-me” clones shortly after Dolly the cloned sheep was born in 1996. Not long after, people freaked out about women freezing their eggs: Not only could crazy clock-tickers bypass needing men, they now could have children when they were alarmingly old. Finally, rich people would pay poor women to carry their babies. That’s after they genetically screened their embryos and selected only the ones they hoped would be—to quote Zoolander—“Really, really, really ridiculously good-looking.” The rest would linger in freezers indefinitely.
These predictions largely haven’t come to pass, and most experts would agree that these now-mainstream fertility options actually strengthen human connection by giving more people the chance to experience the joy of parenthood and avoid passing on devastating diseases.
As for the handwringing over Dolly, the verdict 20 years later is that no one so far has succeeded in cloning a human.
Just as the world gets used to those advancements, we’re experiencing a new wave of anxiety over the wider role of DNA technology in our lives. Despite the increasing ability of genetic sequencing to detect disease (and future disease risk), consumers worry about being discriminated against at work or denied health insurance. Even new programs that sequence babies at birth have brought up difficult questions: Are you saddling your kids with unnecessary angst or being a responsible parent? Instead of empowerment, the fear narrative focuses on what could be taken away, whether it’s personal agency or social inclusion.
Last week, we got a glimpse of what can go wrong when the DNA technology is used to victimize: The New York Times reported that Chinese authorities were using American DNA-sequencing technology as part of a massive surveillance operation to keep track of a Muslim minority group that’s been the target of a Communist “re-education” campaign.
Yet here’s also a sampling of the good that happened this month: DNA evidence led to the arrest of a 72-year-old man believed to have murdered an 11-year-old girl in 1973 – one in a string of cracked cold cases that now make regular headlines. DNA-sequencing company Illumina released data on successfully using whole-genome sequencing to diagnose children suffering from mysterious diseases in the border town of Tijuana, Mexico. The oncology company Guardant Health is seeking FDA approval for a simple blood test to identify the biomarkers that will guide cancer treatment. Chicago primary care doctors started offering patients routine genetic testing to identify their risk of hereditary cancers and heart disease as early as possible. That’s not to mention the stunning work to learn more about the role of DNA in autism, Alzheimer’s disease, the microbiome, and early cancer detection.
Scientific progress should improve our humanness by helping us lead longer healthier lives. Yes, it should keep us vigilant, but not at the expense of staying hopeful. “You can focus on the bad. You can focus on the scary, and certainly there’s a lot of scary out there,” says futurist Juan Enriquez in his widely watched TedX CERN talk. “But just remember, we really are living in an age of miracle and wonder. We’re lucky to be alive today.
Likewise, it’s a lesson Mpendulo’s mother asks her to remember when she considers her origins. In Dumisa’s story, public outcry and government “cold feet” over the mission of Life Everlasting eventually shut down the program. (“Perhaps synthetic stem cells were too great a leap for now,” lamented the worker Belinda.)
“You are no less human than they are, Mpendulo,” Mother had said. “The time will come when people out there are ready to know that.”