data governance
As genomic researchers are encouraged to engage in broad genomic data sharing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a...
The increasing convergence of technology infrastructure and digital connectivity has raised the value of data across the globe. Whether existing knowledge is digitised or new data are ‘born digital’, the impact they have on decision-making, allocation of resources, and innovation is significant...
There is a growing movement among Indigenous peoples to assert aright to “Indigenous data sovereignty,” and yet, the term “data sovereignty” is not widely understood. What does it mean to control the collection, useand management of information in an era of “Big Data,” in which digital technology...
We present the most comprehensive set of estimates to date for status First Nations mortality in Canada. We use administrative data from Indigenous and Northern Affairs Canada to establish a set of stylized facts regarding status First Nations mortality rates. Between 2010 to 2013, the mortality...
Open data in the context of Indigenous peoples is a double-edged sword. Open data is a site of tension for Indigenous peoples. Open data provides opportunities for sustainable development according to Indigenous aspirations, yet also sits at the nexus of current and historic data challenges as a...
Native scholars working to advance the research on indigenous data sovereignty give their perspectives on the issues facing Native communities around data collection and date use. Dr. Jameson D. Lopez (Fort Yuma Quechan (Kwatsáan) Indian Tribe), Carmenlita Chief (Navajo Nation), and Dr. Tennille...
Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past,Indigenous peoples’ engagement with genomic research...
Indigenous Data Sovereignty (IDS) and Indigenous Data Governance are Indigenous-led movements and practices through which Indigenous peoples are setting their own visions for good data regarding data generated and collected by and about them. IDS movements and practices can be seen as a...
