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Establishing a blockchain-enabled Indigenous data sovereignty framework for genomic data.

Tim K Mackey1, Alec J Calac2, B S Chenna Keshava3

  • 1Global Health Program, Department of Anthropology, University of California, San Diego, San Diego, CA, USA; S-3 Research LLC, San Diego, CA, USA; Global Health Policy and Data Institute, San Diego, CA, USA; BlockLAB, San Diego Supercomputer Center, San Diego, CA, USA.

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Summary
This summary is machine-generated.

New blockchain frameworks prioritize Indigenous Data Sovereignty for ethical health genomics. This approach ensures marginalized communities control their valuable genomic data, addressing technological gaps.

Keywords:
blockchaindistributed ledger technologygenomicshealth equityiIndigenous health

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Area of Science:

  • Genomics
  • Data Science
  • Indigenous Studies

Background:

  • Rapid advancements in health and genomic data generation.
  • Existing technologies often overlook the values and priorities of marginalized communities.
  • Need for data frameworks that align with community needs.

Purpose of the Study:

  • To conceptualize a blockchain genomics data framework.
  • To integrate the principles of Indigenous Data Sovereignty into genomic data management.
  • To propose an ethical and community-centered approach to health data.

Main Methods:

  • Conceptual framework development.
  • Literature review on blockchain technology and Indigenous Data Sovereignty.
  • Analysis of current gaps in genomic data practices.

Main Results:

  • A proposed blockchain genomics data framework is conceptualized.
  • The framework is built upon the principles of Indigenous Data Sovereignty.
  • Potential for enhanced data security, control, and ethical governance.

Conclusions:

  • Blockchain technology offers a viable solution for implementing Indigenous Data Sovereignty in genomics.
  • This framework can empower marginalized communities in managing their health data.
  • Future work should focus on developing and testing this framework in real-world applications.