User:Huntermd33/CARE Principles for Indigenous Data Governance

Bibliography

References

1. Summer Internship for INdigenous Peoples in Genomics or SING
   1. Claw, Katrina G., et al. "Summer internship for INdigenous peoples in Genomics (SING) Consortium." A framework for enhancing ethical genomic research with .........Indigenous communities. Nat Commun 9.1 (2018): 2957.
      1. This article highlights the lack of representation in genomics and health research for Indigenous populations, keeping them from the benefits of integrated genomics technologies, such as prediction of disease susceptibility. This article therefore proposed six principles for genomics research to stay ethical in regards to Indigenous communities: “understand existing regulations, foster collaboration, build cultural competency, improve research transparency, support capacity building, and disseminate research findings”. They emphasize that the integration of genomics technologies should include and represent all populations, including Indigenous peoples, to expand knowledge and because it has potential to improve medical approaches for all populations.
   2. Cohort, Minds First Nations. "“All About Us”: Indigenous Data Analysis Workshop-Capacity Building in the Canadian Alliance for Healthy Hearts and Minds First Nations .........Cohort."
      1. Although this article is incomplete with the abstract missing, it appears to start by highlighting the history of helicopter research when it comes to indigenous populations aiding researchers, whether that be with blood samples or shared knowledge. Because of this fact, there was a 3-day “data management and analysis workshop”, held by the Canadian Alliance for Healthy Hearts and Minds First Nations (CAHHM-FN), which is “a collaboration of 8 first nations and researchers at 8 universities”. This article and convening emphasized the necessity for Indigenous data sovereignty “and [that the] control to enable indigenous self-determination requires building data management and analysis capacities among indigenous research partners”
2. Native BioData Consortium
   1. Bakhireva, Ludmila N., et al. "Inclusion of American Indians and Alaskan Natives in Large National Studies: Ethical Considerations and Implications for Biospecimen .........Collection in the HEALthy Brain and Child Development Study." Adversity and Resilience Science 1.4 (2020): 285-294.
      1. This article is meant to raise “ethical and cultural considerations” pertaining to the Healthy Brain and Child Development (HBCD) study, specifically pertaining to its data collection from American Indian and Alaskan Native (AIAN) populations. They compare this to historical accounts regarding similar instances between institutions and AIAN and finish with a recommendation for “biospecimen collection/biobanking with AIAN communities…”. This would also need to be accessed fully as what I have found of the text is incomplete.
   2. Tsosie, Krystal S. "Models of Data Governance and Advancing Indigenous Genomic Data Sovereignty." Proceedings of the 26th ACM SIGKDD International .........Conference on Knowledge Discovery & Data Mining. 2020.
      1. This article would potentially be helpful in understanding mechanisms of current data governance (or lack thereof) when it comes to data generated within and pertaining to Indigenous communities. This in turn would help us to understand why fully encompassing models for Indigenous data sovereignty are needed. The article link is not for the full article, however, so I need to find a full text version somehow.