Sample (Re)size

As a UMD senior, Keolu Fox ’08 entrenched himself on Maryland’s Eastern Shore, building a rapport with African-American women there before asking them to help identify genetic markers linked to an aggressive type of breast cancer.

He soon learned his work with anthropology Professor Fatimah Jackson—as focused on high-risk individuals as on the blood samples they might donate—was rare in the research world.

Co-founder of the nonprofit IndiGenomics, Fox is now a geneticist on a mission to promote research for the people—especially indigenous and minority communities traditionally left out of DNA sequencing and clinical studies.

“I want to be there for the least, the last, the left behind,” says Fox, 30, a postdoctoral fellow at the University of California, San Diego. “That’s the biggest form of activism. It’s not about hashtags. It’s finding the problems and creating cohesive solutions.”

During a February 2015 TED talk, Fox decried the fact that 96 percent of genome-wide association studies have been conducted on people of European descent—despite widespread recognition that people with different ethnic backgrounds are more prone to certain conditions and metabolize drugs differently.

Excluding minorities from the sequencing process means predictive tools and treatments might ignore their specific needs, further widening health disparities.

Some overlooked populations also carry protective forces that deserve a deeper look: Inuits in Greenland who rarely develop heart disease, a group of short-statured Peruvians for whom cancer is an anomaly.

“These are the people we should be sequencing,” Fox says. “You look at the right genes and you could understand the underlying mechanisms. These are extremely valuable to medicine.”

Fox began questioning genetic variations as a boy in Hawaii, where native people susceptible to leprosy were exiled to the Kalaupapa peninsula for more than 100 years.

As a researcher, he questions why more isn’t being done to understand the obesity epidemic among American Samoans and other islanders. He has examined genes that increase hypertension and diabetes risk among African Americans in studies designed to attract minority participants.

To increase genetic information available to researchers, Fox says, drug makers and major laboratories should prioritize diversity among staff and study participants.

But getting everyone on board isn’t as easy as asking the right people. It was only 2010 when the Havasupai tribe in the Grand Canyon was awarded $700,000 from Arizona State University after learning genetic samples collected from members had been used in research beyond the initial study.

IndiGenomics provides consultations to tribal and local bodies—including the National Congress for American Indians—to help them move past former abuses and become advocates.

“They should be treated as partners, not subjects,” Fox says.