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Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Maui HudsonNanibaa' A GarrisonRogena SterlingNadine R CaronKeolu FoxJoseph YrachetaJane AndersonPhil WilcoxLaura ArbourAlex BrownMaile TaualiiTahu KukutaiRodney HaringBen Te AikaGareth S BaynamPeter K DeardenDavid ChagneRipan S MalhiIbrahim GarbaNicki TiffinDeborah A BolnickMatthew B StottAnna K RollestonLeah L BallantyneRay LovettDominique David-ChavezAndrew MartinezAndrew SporleMaggie WalterJeff ReadingStephanie Russo Carroll
Published in: Nature reviews. Genetics (2020)
Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.
Keyphrases
  • copy number
  • electronic health record
  • big data
  • mental health
  • healthcare
  • social media
  • physical activity
  • public health
  • gene expression
  • deep learning