Why you should care
Because people who need genome sequencing the most shouldn’t be the last to benefit.
The Skype camera clicks on and there’s Keolu Fox, making a funny face at me from the other end — not exactly the greeting I was expecting from a geneticist who’s studying genome sequencing. But I quickly learn that Fox isn’t your run-of-the-mill scientist.
Fox, 30, is a geneticist who’s trying to make genome sequencing, what he calls the Rolls-Royce of medicine, more inclusive. The Hawaiian-born TED Fellow draws from his personal experience as an indigenous American to inform his professional advocacy to “make genetic research more native,” as he puts it in his talk above. He’s one of a handful of scientists campaigning for the inclusion of more than just white, European genes in DNA sequencing. Already, he’s discovered a new genetic marker in African-Americans and heads up an NGO called IndiGenomics, aimed at shepherding indigenous communities into the genomics conversation. Oh, and he hasn’t even finished school yet: When Fox successfully defends his dissertation at the University of Washington, he thinks he will become the first Hawaiian person with a Ph.D. on genome sequencing.
When the Human Genome Project, a global collaborative project to comprehensively map and understand the entirety of human genes, launched a decade ago, it promised something chilling and futuristic: an opportunity to deliver more precise medical treatments, based on a person’s unique genetic makeup. But as it stands, 96 percent of sequenced DNA comes from people of European descent and less than 1 percent from indigenous communities. Though some 99 percent of all human DNA is the same across individuals, a body of research shows that people from different ethnic backgrounds react to and metabolize drugs differently. According to Dr. Fatimah Jackson, a human biologist at Howard University and Fox’s mentor, “there will be no precision medicine for those whose genomes are not in the database,” which will “magnify the level of inequality” in health research. Most of the examples we have that show why this research matters, she says, come from what we don’t know, like why sickle cell is so prevalent among some African populations, because so little tailored research is being done.
You don’t need to be in the lab to see stark health gaps between privileged communities and indigenous communities. Fox’s Hawaii boasts the longest life expectancy of any state in the U.S. for non-natives. Native Hawaiians die around 10 years earlier thanks to cardiovascular disease and Type 2 diabetes. Fox believes we not only need to offer public health programs and services, but that we should also engage with those health differences on a micro scale: If we had access to those populations’ genome sequencing, we could discover new sources of illnesses in certain groups of people and how to fight back.
Fox’s maternal family is from Hawaii’s Big Island — “A first canoe kind of thing,” he says, referring to how long they’ve been there — and his dad grew up traipsing through North Africa and Israel. His parents split when he was young, and he and his mom relocated to what might as well have been another planet: a government subsidized cooperative in southern Maryland’s Prince George’s County, known more for its rough neighborhoods than white sand beaches. “No one knew what to do with a Hawaiian kid with a funny name,” he says. He got into trouble, compiling a criminal record along the way, even as he “liked winning” and managed to hang on to his spot in honors classes. After high school, he says, it was the Navy or college. He found himself at the University of Maryland, where his mom worked; tuition was waived and he earned a spot on the soccer team.
College was transformative. He muddled his way through the first semester, then found himself in a class with Jackson, an anthropologist, ex–Black Panther, Muslim woman with six kids. She listened to him, he remembers, in a way other teachers never had. “It was a switch,” he says. From then on he started banging out 4.0s — zooming up from a 1.8 his first semester — and found inspiration in classes on archaeology, Asian philosophy and the biological effects of the transatlantic slave trade, all of which inform his science today. The coursework reminded him of the strong emphasis Hawaiian heritage places on the past. From there an interest in genetics crept in and he dove into an honors thesis looking at protein signaling in triple negative breast cancer, which disproportionately affects Black women. That’s when he really started thinking about the blurred lines between social issues and genetic predisposition.
But the journey wasn’t easy. One night while at a house party in college, some guys he knew showed up — to rob the party. His worlds collided. “It’s hard for people to actually understand what goes on for minority students at these academic institutions,” he says. That sense of imbalance, he says, is something he’s battled throughout his career.
After college Fox took an internship, then a fellowship at the National Institutes of Health, working under Dr. Ed Ramos, who advised then Senator Barack Obama on the creation of the Genetic Information Non-Discrimination Act, a law that prohibits the use of genetic information to discriminate in the provision of health insurance and employment. Fox recalls Ramos teaching him how to tie a tie and taking him to networking events. “The impostor syndrome is real, dude,” he says, even as the country’s most prestigious geneticists request his presence in their labs and he joins their ranks.