Geneticist Krystal Tsosie advocates for Indigenous data sovereignty

Krystal Tsosie grew up playing in the wide expanse of the Navajo Nation, scrambling up sandstone rocks and hiking in canyons in Northern Arizona. But after her father started working as a power plant operator at the Phoenix Indian Medical Center, the family moved to the city. “That upbringing in a lower socioeconomic household in West Phoenix really made me think about what it meant to be a good advocate for my people and my community,” says Tsosie, who like other Navajo people refers to herself as Diné. Today, she’s a geneticist-bioethicist at Arizona State University in Tempe. The challenges of urban life for Tsosie’s family and others, plus the distance from the Navajo Nation, helped spark the deep sense of community responsibility that has become the foundation of her work.

Tsosie was interested in science from an early age, volunteering at the Phoenix Indian Medical Center in high school with the hopes of eventually becoming a doctor. She remembers seeing posters at the Indian Health Service clinic in Phoenix warning against the dangers of rodents and dust. The posters were put up in response to cases of hantavirus pulmonary syndrome, or HPS, in the Four Corners area. Though the disease had not been identified by Western science until that 1993 outbreak, it had long been known within the Navajo tradition. Learning how Navajo oral traditions helped researchers understand HPS made Tsosie want to work in a laboratory studying diseases, instead of becoming a practicing physician.

Tsosie settled on cancer biology and research after college, in part because of the health and environmental impacts of decades of uranium mining on the Navajo Nation. But after leaving Arizona for the first time after college, Tsosie was confronted with the profit-driven realities and what she calls the “entrenched, systemic racism” of the biomedical space. She saw a lack of Indigenous representation and disparities that prevented Indigenous communities from accessing the best health care. Tsosie began asking herself whether her projects would be affordable and accessible to her community back home. “I didn’t like the answer,” she says.

The need for Indigenous geneticists

So Tsosie returned to Arizona State to work on a master’s degree in bioethics with the intention of going to law school. But the more she learned about how much genetic research relies on big data and how those data are shared and used, the more Tsosie realized there was a huge need for Indigenous geneticists.

Around the world, scientific use of Indigenous genetic data has led to repeated violations of rights and sovereignty. For example, beginning in 1990, Havasupai Tribal members gave DNA samples to researchers from ASU, hoping to understand more about diabetes in their community. Researchers eventually used the Havasupai DNA in a range of studies, including for research on schizophrenia and alcoholism, which the Havasupai say they had not been properly informed about or consented to. In 2010, the Arizona Board of Regents settled with Tribal members for $700,000 and the return of the DNA samples, among other reparations.

The Havasupai case is perhaps the most high-profile example in a long history of Western science exploiting Indigenous DNA. “We have an unfortunate colonial, extractive way of coming into communities and taking samples, taking DNA, taking data, and just not engaging in equitable research partnerships,” Tsosie says.

This history prompted the Navajo Nation in 2002 to place a “moratorium on genetic research studies conducted within the jurisdiction of the Navajo Nation.” It has also, along with the growth of genomics, convinced Tsosie that Indigenous geneticists must play a big role in protecting Indigenous data and empowering Indigenous peoples to manage, study and benefit from their own data. “It’s the right of indigenous peoples to exercise authority, agency, autonomy, and self-direct and self-govern decisions about our own data,” she says.

Tsosie was determined to become one of those Indigenous geneticists, and in 2016, she began dissertation research at Vanderbilt University in Nashville. Around that time, she met Keolu Fox and Joseph Yracheta, two other Indigenous scientists interested in genetics. Fox, who is Kānaka Maoli and a geneticist at the University of California, San Diego, believes Tsosie and others prioritizing Indigenous health and rights represent a paradigm shift in the field of genetics. “Minority health is not an afterthought to someone like Krystal, it is the primary goal,” Fox says. “We have not been allowed to operate large laboratories in major influential academic institutions until now. And that’s why it’s different.”

In 2018, Tsosie, Yracheta and colleagues, with key support from Fox, founded the Native BioData Consortium, an Indigenous-led nonprofit research institute that brings Indigenous scholars, experts and scientists together. The consortium’s biorepository, which Tsosie believes is the first repository of Indigenous genomic data in North America, is located on the sovereign land of the Cheyenne River Sioux Tribe in South Dakota. The consortium supports various research, data and digital capacity building projects for Indigenous peoples and communities. These projects include researching soil health and the microbiome and creating a Tribal public health surveillance program for COVID that has Clinical Laboratory Improvement Amendments certification, as well as hosting workshops for Indigenous researchers.

The work may be even more essential given current genomics trends: With Indigenous nations in the United States restricting access to their DNA, researchers and corporations seek DNA from Indigenous peoples in Latin America.