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Establecimiento de un marco de soberanía de datos indígenas habilitado para blockchain para datos genómicos

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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Los nuevos marcos de blockchain priorizan la soberanía de los datos indígenas para la genómica ética de la salud. Este enfoque asegura que las comunidades marginadas controlen sus valiosos datos genómicos, abordando las brechas tecnológicas.

Palabras clave:
cadena de bloquestecnología de contabilidad distribuidaLa genómicaequidad en saludSalud indígena

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Área de la Ciencia:

  • La genómica
  • Ciencia de los datos
  • Estudios sobre los pueblos indígenas

Sus antecedentes:

  • Avances rápidos en salud y generación de datos genómicos.
  • Las tecnologías existentes a menudo pasan por alto los valores y prioridades de las comunidades marginadas.
  • Necesidad de marcos de datos que se alineen con las necesidades de la comunidad.

Objetivo del estudio:

  • Para conceptualizar un marco de datos de genómica blockchain.
  • Integrar los principios de la soberanía de los datos indígenas en la gestión de datos genómicos.
  • Proponer un enfoque ético y centrado en la comunidad para los datos de salud.

Principales métodos:

  • Desarrollo del marco conceptual.
  • Revisión de la literatura sobre tecnología blockchain y soberanía de datos indígenas.
  • Análisis de las brechas actuales en las prácticas de datos genómicos.

Principales resultados:

  • Se conceptualiza un marco de datos de genómica de cadena de bloques propuesto.
  • El marco se basa en los principios de la soberanía de los datos indígenas.
  • Potencial para mejorar la seguridad de los datos, el control y la gobernanza ética.

Conclusiones:

  • La tecnología Blockchain ofrece una solución viable para implementar la soberanía de datos indígenas en la genómica.
  • Este marco puede empoderar a las comunidades marginadas en la gestión de sus datos de salud.
  • El trabajo futuro debe centrarse en desarrollar y probar este marco en aplicaciones del mundo real.