Empowering Indigenous Communities: Geneticist Krystal Tsosie Champions Data Sovereignty

Geneticist Krystal Tsosie Advocates for Indigenous Data Sovereignty

Geneticist Krystal Tsosie is a passionate advocate for Indigenous data sovereignty, a movement that seeks to protect the rights and autonomy of Indigenous peoples over their own data. Tsosie’s upbringing in a lower socioeconomic household in West Phoenix played a significant role in shaping her sense of community responsibility and advocacy for her people and community.

As a child, Tsosie grew up playing in the wide expanse of the Navajo Nation, immersing herself in the natural beauty of Northern Arizona. However, her family’s move to the city due to her father’s job at the Phoenix Indian Medical Center exposed her to the challenges of urban life and the distance from the Navajo Nation. These experiences sparked a deep sense of community responsibility within Tsosie, laying the foundation for her future work.

From an early age, Tsosie had a keen interest in science and volunteered at the Phoenix Indian Medical Center in high school, hoping to eventually become a doctor. It was during this time that she became aware of the dangers of diseases like hantavirus pulmonary syndrome (HPS) in the Four Corners area. While Western science had only recently identified HPS, Tsosie learned that it had long been known within the Navajo tradition. This realization sparked her interest in studying diseases in a laboratory setting, rather than pursuing a career as a practicing physician.

After college, Tsosie settled on cancer biology and research, driven in part by the health and environmental impacts of decades of uranium mining on the Navajo Nation. However, her post-college experiences outside of Arizona exposed her to the profit-driven realities and systemic racism within the biomedical space. Tsosie witnessed a lack of Indigenous representation and disparities that hindered Indigenous communities’ access to quality healthcare. These experiences led her to question the affordability and accessibility of her projects for her community, ultimately pushing her towards advocating for Indigenous data sovereignty.

Throughout history, the scientific use of Indigenous genetic data has often resulted in violations of rights and sovereignty. The well-known case of the Havasupai Tribe, who provided DNA samples to researchers from Arizona State University (ASU) in the hope of understanding diabetes in their community, serves as a stark example. The researchers went on to use the Havasupai DNA in various studies without proper informed consent, leading to a legal settlement and the return of the DNA samples.

These exploitative practices prompted the Navajo Nation to place a moratorium on genetic research studies within its jurisdiction in 2002. Tsosie, along with other Indigenous geneticists, believes that Indigenous peoples must play a significant role in protecting their own data and managing its use. She emphasizes that Indigenous peoples have the right to exercise authority, agency, autonomy, and self-governance over their own data.

In 2018, Tsosie, along with her colleagues and the support of Indigenous geneticist Keolu Fox, founded the Native BioData Consortium. This Indigenous-led nonprofit research institute aims to bring together Indigenous scholars, experts, and scientists to address the challenges faced by Indigenous communities in genetic research. The consortium’s biorepository, located on the sovereign land of the Cheyenne River Sioux Tribe in South Dakota, is believed to be the first repository of Indigenous genomic data in North America.

Through the Native BioData Consortium, Tsosie and her colleagues support various research projects, data initiatives, and capacity-building efforts for Indigenous peoples and communities. They strive to create equitable research partnerships and empower Indigenous communities to manage, study, and benefit from their own data.

Overall, Tsosie’s advocacy for Indigenous data sovereignty is driven by her commitment to addressing the historical exploitation of Indigenous genetic data and ensuring that Indigenous peoples have control over their own data. By empowering Indigenous communities and promoting Indigenous representation in the field of genetics, Tsosie aims to create a more just and equitable future for Indigenous peoples.

The Impact of Indigenous Data Sovereignty Advocacy by Krystal Tsosie

The advocacy for Indigenous data sovereignty by geneticist Krystal Tsosie has had a profound impact on Indigenous communities and the field of genetics. Tsosie’s efforts to protect the rights and autonomy of Indigenous peoples over their own data have led to significant changes in research practices and the empowerment of Indigenous communities.

One of the key effects of Tsosie’s advocacy is the increased recognition of the importance of Indigenous representation in genetic research. Historically, Indigenous peoples have been underrepresented in scientific studies, leading to a lack of understanding of their unique genetic profiles and health disparities. Tsosie’s work has highlighted the need for Indigenous geneticists to be actively involved in research, ensuring that Indigenous communities are properly represented and that research is conducted in an ethical and culturally sensitive manner.

Another significant effect of Tsosie’s advocacy is the establishment of the Native BioData Consortium. This Indigenous-led nonprofit research institute serves as a platform for Indigenous scholars, experts, and scientists to collaborate on research projects and initiatives. The consortium’s biorepository, located on the sovereign land of the Cheyenne River Sioux Tribe, provides a secure and culturally appropriate space for storing Indigenous genomic data. This has not only facilitated research but also ensured that Indigenous communities have control over their own data and can make informed decisions about its use.

Through the Native BioData Consortium, Tsosie and her colleagues have been able to support various research projects and capacity-building efforts for Indigenous peoples and communities. This has led to increased access to resources and opportunities for Indigenous researchers, empowering them to contribute to the field of genetics and address health disparities within their own communities.

One of the most significant effects of Tsosie’s advocacy is the shift towards a more equitable and respectful approach to genetic research involving Indigenous communities. The exploitation of Indigenous genetic data by Western science has been a long-standing issue, often resulting in violations of rights and sovereignty. Tsosie’s work has brought attention to these injustices and has prompted researchers and institutions to reassess their practices, ensuring that research partnerships with Indigenous communities are based on principles of equity, informed consent, and respect for cultural protocols.

Furthermore, Tsosie’s advocacy has sparked broader conversations about data sovereignty and the rights of Indigenous peoples in other fields beyond genetics. The principles and frameworks developed through her work have the potential to influence discussions and policies related to data governance, intellectual property rights, and Indigenous rights more broadly.

Overall, the effect of Krystal Tsosie’s advocacy for Indigenous data sovereignty has been transformative. Her work has not only brought attention to the historical exploitation of Indigenous genetic data but has also empowered Indigenous communities to take control of their own data and participate in research on their own terms. Through her efforts, Tsosie has paved the way for a more inclusive, ethical, and respectful approach to genetic research and data sovereignty for Indigenous peoples.