Indigenous Leaders Advancing Data and Genetic Sovereignty
These Indigenous women are widely recognized as data warriors fighting to increase ethical engagement with genomic research.
In November’s episode of On the Vanguard Dr. Anicca Harriot and Dr. Geraldine Ezeka discussed the history of racial identifiers, the scientific accuracy of DNA ancestry testing, ethical practices for genomics research, and the potential consequences of sharing your DNA with companies like Ancestry.com or 23&Me. This conversation wouldn’t be complete without highlighting Indigenous researchers, genomics experts, and data scientists who are working towards more equitable outcomes and engagement in their communities.
Here, we’re highlighting 8 Indigenous women who exemplify what it is to be data warriors*:
Krystal Tsosie, Ph.D., M.P.H.
Dr. Tsosie is a Navajo/Diné geneticist and bioethicist and Assistant Professor in the School of Life Sciences at Arizona State University. Her work focuses on bioethical engagement of Indigenous communities in genomics and data science to build trust. Dr. Tsosie’s “for us, by us” approach aims to address health disparities in tribal populations. Dr. Tsosie is also the co-founder of the first US Indigenous-led biobank, a non-profit research institution called the Native BioData Consortium.
“Who better to protect our data and improve research about us than Indigenous people themselves?” — Krystal Tsosie via ASU News
Desi Small-Rodriguez, Ph.D.
Dr. Small-Rodriguez is a Northern Cheyenne and Chicana sociologist, demographer, data warrior and Assistant Professor of Sociology and American Indian Studies at UCLA. Her research in the Data Warrior Lab is at the intersection of race, indigeneity, citizenship, and inequality. Dr. Small-Rodriguez builds relationships between students, researchers, and Indigenous communities, creating data that support strong self-determined Indigenous futures.
“I believe that I cannot be a good researcher and teacher without being a good relative.” — Dr. Desi Small-Rodriguez via drdesi.com
Stephanie Russo Carroll, Ph.D., MPH
Dr. Carroll is Ahtna from the Native Village of Kluti-Kaah, and of Sicilian-descent. At the University of Arizona, she is Associate Professor of Public Health and Associate Research Professor for the Udall Center for Studies In Public Policy and its Native Nations Institute. Stephanie directs the Collaboratory for Indigenous Data Governance and is chair of the Global Indigenous Data Alliance.
Nanibaa’ Garrison, Ph.D.
Dr. Garrison is a Navajo/Diné geneticist and bioethicist and Associate Professor in the Institute for Society, Institute for Precision Health and the Division of General Internal Medicine & Health Services Research at UCLA. She also teaches bioethics for the genetic counseling master’s program. Dr. Garrison works to foster ethical engagement between researchers and communities to build more equitable futures.
“Most recently, I’ve been engaged in a lot of policy-related discussions with tribes to think through how to strengthen tribal governance over Indigenous data, how to ensure that tribes have the capacity to evaluate genetic research protocols and how to deliver more educational opportunities to tribes.” — Dr. Nanibaa’ Garrison via UCLA College Magazine
Katrina Claw, Ph.D.
Dr. Katrina Claw, a member of the Diné (Navajo) tribe, is an Assistant Professor for the Department of Biomedical Informatics at the University of Colorado. Her research focuses broadly on personalizing medicine, using genetic information and biomarkers for tailored treatment. In 2020, Dr. Claw was awarded the Genomic Innovator Award for her work to “understand individual variation in drug response and provide guidelines for applying personalized medicine in American Indian and Alaska Native (AIAN) [communities]”.
“I am like a bridge. I connect Native knowledge and Western science, but I am also walked over. It can be hard to connect the multiple cultures and ways of knowing, but I am sure this is the best path forward.” — Katrina Claw, via University of Washington School of Pharmacy
Tahu Kukutai, Ph.D.
A sociologist by practice, Dr. Kukutai is of Māori, of Ngāti Tīpā, Ngāti Mahanga, Ngāti Kinohaku, Ngāti Ngawaero and Te Aupōuri descent. She is the Professor of Demography at the National Institute of Demographic and Economic Analysis at the University of Waikato in New Zealand and a founding member of Te Mana Raraunga, the Māori data sovereignty network.
Tahu Kukutai’s research focuses on two distinct but complementary areas: Māori demography and Indigenous data sovereignty... She has published widely on Māori demography and ethnic identity and is recognised internationally for her work on state practices of ethnic and racial classification and census taking. — Quoted from the Royal Society Te Apārangi, News
Dominque M. David-Chavez, Ph.D.
Dr. David-Chavez is an Assistant Professor of Indigenous Natural Resource Stewardship at Colorado’s State University’s Forest and Rangeland Stewardship Department. She is an Associate with Native Nations Institute at the Udall Center for Studies in Public Policy at University of Arizona, working in partnership with the Collaboratory for Indigenous Data Governance. Dr. David-Chavez is also the Director of the Indigenous Land & Data Stewards Lab.
Dr. D draws from her experiences as a multicultural Caribbean Indigenous (Arawak Taíno) community member, research scientist, educator, and learner in her scholarship and practice. In doing so, she holds an intergenerational commitment towards supporting culturally grounded community members as researchers and science leaders, restoring pathways for knowledge regeneration with the original stewards of Indigenous knowledge systems and lands in which they are embedded.
Rene Begay, M.S., MPH
Rene Begay is Diné (Navajo) from the Navajo Nation in Arizona. She is an Indigenous geneticist and public health researcher. She obtained her Bachelors of Science degree in Biology from the University of Arizona and a Masters in Clinical Science from the University of Colorado Anschutz Medical Campus. Currently, she works as a Senior Professional Research Assistant at the Centers for American Indian and Alaska Native Health at the University of Colorado School of Public Health. She graduated with her Masters of Public Health degree as a Bloomberg Fellow with the Johns Hopkins School of Public Health focusing on food systems and health. Some of her research interests are exploring the Ethical, Legal, Social, and Cultural implications related to genomics research that includes Indigenous communities. Her goal is to improve the health and well-being of her people as well as other Indigenous groups.
*term coined by Desi Small-Rodriguez
This article was originally published on March 18, 2024 as part of our regular content.
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