‘DataBack': The fight for genomic data sovereignty

Yahoo

11-02-2025

Daniel Herrera CarbajalICT
TEMPE, Arizona — For Krystal Tsosie, tribal sovereignty is in her DNA.
A geneticist, epidemiologist and advocate, Tsosie, Diné, is an accomplished scientist who has made it her mission to bring sovereignty to Native peoples' genomic data.
She calls it a 'DataBack' movement, working to return control of Indigenous DNA information to individuals and their tribes.
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'Too often, researchers believe that they should have access to all data, that they should be able to download the totality of data sets onto local machines.' said Tsosie, an assistant professor at Arizona State University's School of Life Sciences.
'And what's happened unfortunately, time and time again, is the researchers will share that data with other colleagues or even their doctoral students, to conduct research that the Indigenous community members just didn't consent to.'
Genomic data is used for a variety of studies from disease research to population genetics. Essentially, it is DNA that can be used to study genetic variations across different populations.
Tsosie's DataBack movement is focused on genomic health equity, part of which means informing people if and how their data is being used.
For Indigenous peoples, one person's genomic data can identify a large portion of relatives due to smaller population sizes and large families, according to Tsosie.
Because of the impact one person can have on their nation, Tsosie believes it also should also be a right afforded to tribal nations.
'If a data point is collected from Indigenous peoples or Indigenous individuals, that person in that community should have the right to understand or to dictate what happens with that data, or at least consent to the use of that data in other contexts,' Tsosie told ICT.
'But also Indigenous nations as peoples and communities have a communal right to also understand who's using their data, to specifically consent to different types of data usages,' she said. 'That's inherent for Indigenous nations. That's their sovereign right, whether or not colonial powers — for instance, the federal government and really, any colonial government — understand. It is up to all people, including governments, to understand that that's implicit to being a member of an Indigenous nation and that Indigenous nations have the right and authority to steward the data from their own people.'
Tsosie grew up playing in the streams near her maternal grandmother's home on the Navajo Nation, where there was no electricity.
'My mom's side of the family is from Shonto, Arizona, and that's where I spent a huge portion of my upbringing,' she said. 'And in summers on the weekends I would spend this time at my maternal grandmother's house.'
She remembers looking up and seeing the sky full of stars when her grandmother and the elders would be outside conversing with only the light of a kerosene lamp illuminating their faces.
'I loved it,' she said. 'I remember having to chop firewood and run a bath with water that was siphoned from a well that was several miles away, and just herding sheep. And also playing with horses all day.'
In her adolescence, Tsosie grew up wanting to be a doctor and along the way became interested in what causes diseases, specifically in Indigenous peoples.
Tsosie had many internships, including at the Mayo Clinic in Scottsdale, Arizona, and at the virology department at the Arizona Department of Health.
By the age of 24, Tsosie had published works and obtained two patents for devices that would help with early detection of cancer and with delivering drugs at a lower toxicity level.
She was on her way to becoming a full-fledged doctor, and had been admitted into one of the nation's top molecular doctoral programs. That's when her plans changed.
'I got there on the East Coast, and I hated it,' she said. 'I absolutely hated it, because mentors didn't know what to do with me. They thought that it shouldn't matter that I'm Native American because that type of ethnic descriptor really shouldn't have any bearing on my research, whereas I felt like it was absolutely important to understand the cultural context and upbringing of the people that I want to service with my research. And there was just a fundamental disconnect between those conducting the research and those on which research has been perpetuated on.'
Tsosie decided to go back to Arizona State University, intending to never step foot into a lab again. Back in Arizona, she learned the importance of genomics and genomic data approaches.
At Arizona State University, Tsosie has a team of postgraduate and doctoral students, all dedicated to the autonomy of Indigenous peoples' data.
The Tsosie lab began last year and is made up of 12 members, nine of whom are Indigenous.
Each researcher under Tsosie's guidance is conducting their own unique research, from building a framework for exercising and operationalizing Indigenous data sovereignty for neurological data to looking into the ethical and cultural considerations related to ordinary research for Clustered Regularly Interspaced Short Palindromic Repeats, known as CRISPR.
How the data is controlled has been an ongoing issue, she said.
'This has been problematic in the past,' she said. 'For instance, the Havasupai nation sued the Arizona Board of Regents because they brokered a trust relationship with a researcher to conduct studies related to Type 2 diabetes, and the research team ended up studying other things like schizophrenia, which especially then, had a stigma attached. And population migration narratives that were culturally incongruent with their own origin narratives.'
The fight for the sovereignty of Indigenous peoples' data means the need for more Indigenous scientists and leaders, Tsosie said.
'We need more Indigenous scientists and Indigenous leaders who understand the importance of these decisions and wrest control back into Indigenous hands, to hold Indigenous DNA on our lands,' Tsosie said. 'We also need a global recognition of scholars and researchers and even public policy makers in different spheres to understand that Indigenous data sovereignty is a thing. It's a right of our people to exercise authority, agency and autonomy related to our people's DNA and our data.'
For Tsosie, the DataBack movement is just the tip of the iceberg for what she wants for Indigenous people.
'I envision an Indigenous data future in which Indigenous peoples have the authority over their own data and are thinking about writing policies that become codified by tribal law,' Tsosie said. 'That we start thinking about Indigenous digital sovereignties so we start thinking about translating the ethics and the policy and governance into data infrastructures that benefit Indigenous peoples.'
'I'm talking about Indigenous-led and -managed and -stewarded biobanks and data repositories,' she continued. 'I'm talking about Indigenous apps that are being developed for Indigenous nations.
'We owe it to ourselves and our next generations to ensure that our data benefits us.'
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