[HTML][HTML] Using indigenous standards to implement the CARE principles: Setting expectations through tribal research codes
Biomedical data are now organized in large-scale databases allowing researchers
worldwide to access and utilize the data for new projects. As new technologies generate …
worldwide to access and utilize the data for new projects. As new technologies generate …
[HTML][HTML] Extending the CARE Principles from tribal research policies to benefit sharing in genomic research
Indigenous Peoples have historically been targets of extractive research that has led to little
to no benefit. In genomics, such research not only exposes communities to harms and risks …
to no benefit. In genomics, such research not only exposes communities to harms and risks …
[HTML][HTML] Exploring pathways to trust: a tribal perspective on data sharing
R James, R Tsosie, P Sahota, M Parker, D Dillard… - Genetics in …, 2014 - nature.com
The data-sharing policies of the National Institutes of Health aim to maximize public benefit
derived from genetic studies by increasing research efficiency and use of a pooled data …
derived from genetic studies by increasing research efficiency and use of a pooled data …
Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data
Addressing Indigenous rights and interests in genetic resources has become increasingly
challenging in an open science environment that promotes unrestricted access to genomic …
challenging in an open science environment that promotes unrestricted access to genomic …
[HTML][HTML] Access and management: Indigenous perspectives on genomic data sharing
G Nanibaa'A, KS Barton, KM Porter, T Mai… - Ethnicity & …, 2019 - ncbi.nlm.nih.gov
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 …
American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions …
Research ethics and indigenous communities
A Kelley, A Belcourt-Dittloff… - American journal of …, 2013 - ajph.aphapublications.org
Institutional review boards (IRBs) function to regulate research for the protection of human
participants. We share lessons learned from the development of an intertribal IRB in the …
participants. We share lessons learned from the development of an intertribal IRB in the …
[HTML][HTML] Operationalizing the CARE and FAIR Principles for Indigenous data futures
As big data, open data, and open science advance to increase access to complex and large
datasets for innovation, discovery, and decision-making, Indigenous Peoples' rights to …
datasets for innovation, discovery, and decision-making, Indigenous Peoples' rights to …
The CARE principles for indigenous data governance
Concerns about secondary use of data and limited opportunities for benefit-sharing have
focused attention on the tension that Indigenous communities feel between (1) protecting …
focused attention on the tension that Indigenous communities feel between (1) protecting …
Indigenous research ethics requirements: an examination of six tribal institutional review board applications and processes in the United States
Tribal Institutional Review Boards (TIRBs) in the United States assert their rights within
sovereign nations by developing ethical research processes that align with tribal values to …
sovereign nations by developing ethical research processes that align with tribal values to …
Conducting research with tribal communities: Sovereignty, ethics, and data-sharing issues
Background: When conducting research with American Indian tribes, informed consent
beyond conventional institutional review board (IRB) review is needed because of the …
beyond conventional institutional review board (IRB) review is needed because of the …