How Should Genetic Engineering Shape Our Future?
Terror. Error. Success. These are the three outcomes that ethicists evaluating a new technology should fear. The possibility that a breakthrough might be used maliciously. The possibility that newly empowered scientists might make a catastrophic mistake. And the possibility that a technology will be so successful that it will change how we live in ways that we can only guess—and that we may not want.
These tools will allow scientists to practice genetic engineering on a scale that is simultaneously far more precise and far more ambitious than ever before.
It was true for the scientists behind the Manhattan Project, who bequeathed a fear of nuclear terror and nuclear error, even as global security is ultimately defined by these weapons of mass destruction. It was true for the developers of the automobile, whose invention has been weaponized by terrorists and kills 3,400 people by accident each day, even as the more than 1 billion cars on the road today have utterly reshaped where we live and how we move. And it is true for the researchers behind the revolution in gene editing and writing.
Put simply, these tools will allow scientists to practice genetic engineering on a scale that is simultaneously far more precise and far more ambitious than ever before. Editing techniques like CRISPR enable exact genetic repairs through a simple cut and paste of DNA, while synthetic biologists aim to redo entire genomes through the writing and substitution of synthetic genes. The technologies are complementary, and they herald an era when the book of life will be not just readable, but rewritable. Food crops, endangered animals, even the human body itself—all will eventually be programmable.
The benefits are easy to imagine: more sustainable crops; cures for terminal genetic disorders; even an end to infertility. Also easy to picture are the ethical pitfalls as the negative images of those same benefits.
Terror is the most straightforward. States have sought to use biology as a weapon at least since invading armies flung the corpses of plague victims into besieged castles. The 1975 biological weapons convention banned—with general success—the research and production of offensive bioweapons, though a handful of lone terrorists and groups like the Oregon-based Rajneeshee cult have still carried out limited bioweapon attacks. Those incidents ultimately caused little death and damage, in part because medical science is mostly capable of defending us from those pathogens that are most easily weaponized. But gene editing and writing offers the chance to engineer germs that could be far more effective than anything nature could develop. Imagine a virus that combines the lethality of Ebola with the transmissibility of the common cold—and in the new world of biology, if you can imagine something, you will eventually be able to create it.
The benefits are easy to imagine: more sustainable crops; cures for terminal genetic disorders; even an end to infertility. Also easy to picture are the ethical pitfalls.
That's one reason why James Clapper, then the U.S. director of national intelligence, added gene editing to the list of threats posed by "weapons of mass destruction and proliferation" in 2016. But these new tools aren't merely dangerous in the wrong hands—they can also be dangerous in the right hands. The list of labs accidents involving lethal bugs is much longer than you'd want to know, at least if you're the sort of person who likes to sleep at night. The U.S. recently lifted a ban on research that works to make existing pathogens, like the H5N1 avian flu virus, more virulent and transmissible, often using new technologies like gene editing. Such work can help medicine better prepare for what nature might throw at us, but it could also make the consequences of a lab error far more catastrophic. There's also the possibility that the use of gene editing and writing in nature—say, by CRISPRing disease-carrying mosquitoes to make them sterile—could backfire in some unforeseen way. Add in the fact that the techniques behind gene editing and writing are becoming simpler and more automated with every year, and eventually millions of people will be capable—through terror or error—of unleashing something awful on the world.
The good news is that both the government and the researchers driving these technologies are increasingly aware of the risks of bioterror and error. One government program, the Functional Genomic and Computational Assessment of Threats (Fun GCAT), provides funding for scientists to scan genetic data looking for the "accidental or intentional creation of a biological threat." Those in the biotech industry know to keep an eye out for suspicious orders—say, a new customer who orders part of the sequence of the Ebola or smallpox virus. "With every invention there is a good use and a bad use," Emily Leproust, the CEO of the commercial DNA synthesis startup Twist Bioscience, said in a recent interview. "What we try hard to do is put in place as many systems as we can to maximize the good stuff, and minimize any negative impact."
But the greatest ethical challenges in gene editing and writing will arise not from malevolence or mistakes, but from success. Through a new technology called in vitro gametogenesis (IVG), scientists are learning how to turn adult human cells like a piece of skin into lab-made sperm and egg cells. That would be a huge breakthrough for the infertile, or for same-sex couples who want to conceive a child biologically related to both partners. It would also open the door to using gene editing to tinker with those lab-made embryos. At first interventions would address any obvious genetic disorders, but those same tools would likely allow the engineering of a child's intelligence, height and other characteristics. We might be morally repelled today by such an ability, as many scientists and ethicists were repelled by in-vitro fertilization (IVF) when it was introduced four decades ago. Yet more than a million babies in the U.S. have been born through IVF in the years since. Ethics can evolve along with technology.
These new technologies offer control over the code of life, but only we as a society can seize control over where these tools will take us.
Fertility is just one human institution that stands to be changed utterly by gene editing and writing, and it's a change we can at least imagine. As the new biology grows more ambitious, it will alter society in ways we can't begin to picture. Harvard's George Church and New York University's Jef Boeke are leading an effort called HGP-Write to create a completely synthetic human genome. While gene editing allows scientists to make small changes to the genome, the gene synthesis that Church and his collaborators are developing allows for total genetic rewrites. "It's a difference between editing a book and writing one," Church said in an interview earlier this year.
Church is already working on synthesizing organs that would be resistant to viruses, while other researchers like Harris Wang at Columbia University are experimenting with bioengineering mammalian cells to produce nutrients like amino acids that we currently need to get from food. The horizon is endless—and so are the ethical concerns of success. What if parents feel pressure to engineer their children just so they don't fall behind their IVG peers? What if only the rich are able to access synthetic biology technologies that could make them stronger, smarter and longer lived? Could inequality become encoded in the genome?
These are questions that are different from the terror and errors fears around biosecurity, because they ask us to think hard about what kind of future we want. To their credit, Church and his collaborators have engaged bioethicists from the start of their work, as have the pioneers behind CRISPR. But the challenges coming from successful gene editing and writing are too large to be outsourced to professional ethicists. These new technologies offer control over the code of life, but only we as a society can seize control over where these tools will take us.
When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
A sleek, four-foot tall white robot glides across a cafe storefront in Tokyo’s Nihonbashi district, holding a two-tiered serving tray full of tea sandwiches and pastries. The cafe’s patrons smile and say thanks as they take the tray—but it’s not the robot they’re thanking. Instead, the patrons are talking to the person controlling the robot—a restaurant employee who operates the avatar from the comfort of their home.
It’s a typical scene at DAWN, short for Diverse Avatar Working Network—a cafe that launched in Tokyo six years ago as an experimental pop-up and quickly became an overnight success. Today, the cafe is a permanent fixture in Nihonbashi, staffing roughly 60 remote workers who control the robots remotely and communicate to customers via a built-in microphone.
More than just a creative idea, however, DAWN is being hailed as a life-changing opportunity. The workers who control the robots remotely (known as “pilots”) all have disabilities that limit their ability to move around freely and travel outside their homes. Worldwide, an estimated 16 percent of the global population lives with a significant disability—and according to the World Health Organization, these disabilities give rise to other problems, such as exclusion from education, unemployment, and poverty.
These are all problems that Kentaro Yoshifuji, founder and CEO of Ory Laboratory, which supplies the robot servers at DAWN, is looking to correct. Yoshifuji, who was bedridden for several years in high school due to an undisclosed health problem, launched the company to help enable people who are house-bound or bedridden to more fully participate in society, as well as end the loneliness, isolation, and feelings of worthlessness that can sometimes go hand-in-hand with being disabled.
“It’s heartbreaking to think that [people with disabilities] feel they are a burden to society, or that they fear their families suffer by caring for them,” said Yoshifuji in an interview in 2020. “We are dedicating ourselves to providing workable, technology-based solutions. That is our purpose.”
Shota Kuwahara, a DAWN employee with muscular dystrophy. Ory Labs, Inc.
Wanting to connect with others and feel useful is a common sentiment that’s shared by the workers at DAWN. Marianne, a mother of two who lives near Mt. Fuji, Japan, is functionally disabled due to chronic pain and fatigue. Working at DAWN has allowed Marianne to provide for her family as well as help alleviate her loneliness and grief.Shota, Kuwahara, a DAWN employee with muscular dystrophy, agrees. "There are many difficulties in my daily life, but I believe my life has a purpose and is not being wasted," he says. "Being useful, able to help other people, even feeling needed by others, is so motivational."