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Creating Community-Driven Genomic Data for Native Peoples

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Krystal Tsosie

While pursuing a PhD in cancer biology, Krystal Tsosie had a stark realization: that the therapeutics she might ultimately develop may not in the end benefit her community, the Navajo Nation. 

“I had this fundamental reckoning that if I were to be one of the few Native Americans to get a PhD in a STEM field that I would want to make sure that the field actually benefits my people,” she recalls. 

Tsosie decided to leave the PhD program she was in and return to her hometown to instead pursue law at Arizona State University. Ultimately, she got a master’s degree in bioethics, which she viewed as a bridge between science and law, and would then go on to get a second master’s degree in public health and a PhD in genetics and health disparities at Vanderbilt University. She was on a new mission: to empower her community, and other Indigenous groups, to gain agency over their genomic data. 

Now transitioning to an assistant professor position at Arizona State University, Tsosie teaches bioethics, looking at topics like genomic data equity, and she advocates for Indigenous data sovereignty through the nonprofit Native BioData Consortium and workshops (including one funded by the Amgen Foundation and the National Science Foundation). Much of her work looks at power dynamics, “ensuring that the communities that provide data are the first to benefit,” she says.

Traditionally, Tsosie explains, the scientific community has generally viewed Indigenous peoples as an undiscovered “frontier” for genetic variation. “The fact that Indigenous people have not been studied means that there's potentially a huge amount of information that could be valuable from them to inform medical safety for everyone else,” she says. “If we're not careful, that is the exact definition of exploitation, which is why it’s really important that Indigenous peoples, and any small untested population, have equal access and say over the data that is collected from them.”

Tsosie gives an example of the Human Genome Diversity Project. An early publication from the Project said that “there was a rush to sample Indigenous global populations before they ‘vanish,’” a characterization that she says is objectifying and harmful. “So, it wasn't really caring about providing a therapeutic potential to Indigenous people, but rather, it was more of a rush to sample as many Indigenous peoples before they started being diminished in numbers due to colonial factors.”

When the Project published findings in 2005, they included results from more than 50 populations worldwide, including non-U.S. Indigenous populations in South and Central America. Those populations were largely unprotected, she says, unlike U.S. tribes, which are sovereign nations. The data published about them were made freely available online, and commercial companies still profit off those data now, she says—such as the popular online companies that test ancestry via DNA. Not only do those populations studied not benefit from those commercial activities, but the online sequencing also creates a “false narrative,” Tsosie says, that Indigeneity is biological rather than cultural. 

In her work, such as with the Native BioData Consortium, Tsosie wants to enable Indigenous communities to make decisions about whether and how to contribute genomic data for research and to then be among the first to benefit from it. “The Consortium is the first of its kind in the United States,” she says. 

The Consortium houses all the data locally within the legal and geographic bounds of the participating tribes, which helps build trust. “Tribal members will be more likely to trust an entity that's physically located on their land,” Tsosie explains. Importantly, the Consortium also has one of the largest cohorts of Indigenous trained scientists in genomics and data science helping to run the organization, as well as community members who provide oversight. 

Having this representation is especially important, she says, for the stewardship of the data. “The thing I love about data science is there are fascinating computation tools to very quickly discover associations that relate to disease,” she says. “The problem with data science, though, is that it gets away from the individual; it starts removing the human element.” Tsosie’s goal with the Consortium is to always make sure that the research questions to be answered by the data are relevant to the people who provided the data. 

Tsosie also points to the importance of structural factors when it comes to health. “The truth of the matter is that while genetics is really important as a predisposing factor for many conditions, it's not the primary determinant of disparities in health,” she says. “It ignores structural factors— colonial factors, environmental factors, and also cultural factors. And these are things that are not easily interrogated in the electronic health record or by a person’s DNA.”

One example, she says, is a 2018 report that showed that the funding for each patient in the Indian Health Service was about 2.4 times lower than for the national per capita. And this has been further exacerbated during the COVID-19 pandemic. “It could take months sometimes in non-pandemic conditions to get a preventative health appointment in rural tribal communities,” she says, let alone during a public health emergency.

Genomics data also raises privacy issues, such as with potential applications in law enforcement. In a recent case in San Francisco, for example, police used DNA from a woman who was a victim of one crime to then investigate her for another crime. Though the case against the woman was dropped, the case points to the ways in which genomic data are often not protected, or could be used without fully informed consent. In particular, Tsosie points to the dangers in “collectivizing DNA from communities of color,” including exacerbating the risk for racial genomic profiling.

Sitting at the intersection of science, law, and ethics has given Tsosie unique insight into the world of genomic data, one that she uses every day to help her community. It’s an uphill battle in many ways, as many drug companies want to collect data from Indigenous groups but do not want to create therapeutics for them because of the small market. At the end of the day, she says, “the decision of whether or not the use of a community member’s DNA will be good or bad resides in the community. If it resides in anyone else's authority outside of the community, that’s not just; that’s not equitable.”
 

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