Krystal Tsosie, an Assistant Professor at Arizona State University and the Associate Director of the Biodiversity Knowledge Integration Center, is a leading figure in advocating for Indigenous data sovereignty. As a co-founder of the Native BioData Consortium, a Luce Foundation grantee, she passionately champions the control and beneficial use of data by Indigenous communities.

Her scientific journey commenced in a BSL-3 laboratory at the Arizona State Lab, focusing on infectious diseases like Ebola and conducting critical research on pathogens such as the West Nile virus. However, practical challenges and the lab’s physical demands prompted Tsosie to shift her focus to cancer biology. This shift revealed a troubling trend: the frequent prioritization of commercial interests over community welfare in research.

Speaking at the Luce Foundation’s 2024 Clare Boothe Luce conference for women in STEM, Tsosie shared that her career journey prompted her to deeply consider the direct benefits of her work to Indigenous communities, leading her to explore bioethics and law. She recognized other concerning patterns in genetic research and emphasized the necessity of Indigenous data sovereignty, asserting the intrinsic rights of Indigenous peoples to manage their data.

“Genetic research and data collection must be conducted with an unwavering commitment to respect and autonomy,” Tsosie noted, emphasizing the intrinsic rights of Indigenous peoples to manage their data, a stark contrast to the exploitation and injustice often seen in commercial genomic research.

Tsosie’s resolve solidified when pharmaceutical companies sought access to biobank data without considering the conditions prevalent in Indigenous populations. This selective interest underscored the profit-driven nature of much research, neglecting the needs of marginalized communities. In response, Tsosie insisted that any research using their data must directly benefit their communities, aligning with the mission of the Native BioData Consortium.

“Data power is not just about statistical significance; it’s about the power dynamics that underpin data collection and usage,” she argued, stressing the need for ethical data usage in research practices.

Drawing from her experiences as a Navajo, Tsosie highlighted the historical mistrust between Indigenous communities and researchers and emphasized the pivotal moment in her career when she integrated traditional knowledge with scientific research, enriching her studies.

To combat these issues, Tsosie advocates for innovative data practices, such as federated data systems, dynamic consent models, and blockchain technologies.

Tsosie’s work goes beyond scientific achievements, showing a deep commitment to justice and respect for Indigenous rights. Her efforts aim to establish a future where research is inclusive and reciprocally beneficial, ensuring that Indigenous communities can influence research that directly impacts them. As STEM fields evolve, Tsosie’s advocacy serves as a crucial reminder that actual progress must be founded on principles of justice and inclusivity.

The Clare Boothe Luce Program (CBL) was initiated in 1989 through a bequest by Ambassador Clare Boothe Luce. Since its inception, it has become the largest private supporter of women in STEM fields within higher education in the United States. The program has fostered diversity and inclusion in STEM by supporting undergraduate, graduate, and faculty women at various educational institutions nationwide. Over the past 35 years, the CBL program has distributed approximately $250 million through nearly 900 grants to over 200 colleges and universities. More than 70 of these grants have been awarded to minority-serving institutions. Through these efforts, CBL has supported over 3,500 women, helping to shape the next generation of female leaders in STEM. Learn more.