genomics

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Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes

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 even larger amounts of data, data governance and data management are becoming pressing challenges. The FAIR principles (Findable,…

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Balancing openness with Indigenous data sovereignty_An opportunity to leave no one behind in the journey to sequence all of life

Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life

The field of genomics has benefited greatly from its “openness” approach to data sharing. However, with the increasing volume of sequence information being created and stored and the growing number of international genomics efforts, the equity of openness is under question. The United Nations…

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Post COVID-19 Implications for Genetic Diversity and Genomics Research & Innovation.png

Post COVID-19 Implications for Genetic Diversity and Genomics Research & Innovation: A Call for Governance and Research Capacity

At a time of significant technological change and digitization in the biological sciences, the COVID-19 pandemic has highlighted again the inequities in the research and innovation ecosystem. Based on a consultation with an internationally diverse group of stakeholders from multiple fields and…

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Access and Management: Indigenous Perspectives on Genomic Data Sharing

Access and Management: Indigenous Perspectives on Genomic Data Sharing

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…

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Genomic Research Through an Indigenous Lens: Understanding the Expectations

Genomic Research Through an Indigenous Lens: Understanding the Expectations

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…