From exploitation to empowerment: how researchers can protect Indigenous peoples’ rights to own and control their data; Nature, November 27, 2024

 Cassandra Sedran-Price, Nature; From exploitation to empowerment: how researchers can protect Indigenous peoples’ rights to own and control their data

"So, what can be done? Indigenous Data Sovereignty, which refers to Indigenous peoples’ rights to own and control Indigenous data, can and should be protected through research practices, including how contracts are written and teams are structured. This right, supported by the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), emphasizes the fact that Indigenous peoples should be in the driver’s seat for research that affects us. We should be the decision-makers from the point of conceptualization — from setting the research priorities through to dissemination of the data and ongoing data management, including how they are stored, accessed and used. It is through Indigenous peoples’ involvement that systemic injustices can be broken down, and equity, shared benefits and data protection can be realized.

Researchers and institutions must take the lead in understanding how to develop and implement mechanisms to enact Indigenous data sovereignty, known as Indigenous data governance. An important first step is aligning policies and practices with national and international frameworks and treaties for the protection of Indigenous knowledge and data. The CARE Principles for Indigenous data governance (the acronym stands for Collective benefit, Authority to control, Responsibility and Ethics) for example, were designed to strengthen and uphold Indigenous rights to data, while refocusing data governance to prioritize value-based relationships5.

In Western society, intellectual property (IP) laws offer a means of protection for knowledge and data. These laws can establish ownership and authorship of IP in the form of copyright, trademarks and patents. But they do not fully recognize our lore and experiences as Indigenous peoples, nor the specific forms of Indigenous knowledge and data that may be accessed and shared. This is where research-related agreements, such as contracts and data-sharing agreements, can create greater equity and opportunities to prioritize and support shared power, shared resources, mutual understanding and respect for our cultural protocols."

ScienceAdviser: Shifting from harm to resilience Today in Science and science: ScienceAdviser honors Indigenous Peoples’ Day; Science, October 14, 2024

ScienceAdviser: Shifting from harm to resilience

"Today, in honor of Indigenous Peoples’ Day, Science Staff Writer Rodrigo Pérez Ortega speaks with Diné genetic epidemiologist Krystal Tsosie about the holiday and the importance of Indigenous data sovereignty. The rest of this edition of ScienceAdviser is centered on research that is relevant to and/or being conducted by Indigenous scientists and communities...

Your work has focused on Indigenous data sovereignty. Can you tell me more about the current efforts pushing for Native tribes to have control over their own data?

One recent effort is the #DataBack movement, which is about reclaiming control over Indigenous data, specifically genomic and biological data that have been taken and stored without our consent. My colleague, Keolu Fox, and I have been advocating for Indigenous data sovereignty. We’ve even made stickers to raise awareness, and I love seeing them on water bottles and in public spaces. It’s a small, symbolic way to promote the idea that Indigenous data should be returned to the communities it belongs to."