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Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public.

Vanessa WarrenChristine CritchleyRebekah McWhirterJarrod WalsheDianne Nicol
Published in: BMC medical genomics (2023)
Qualitative responses provide insight into popular assumptions regarding existing protections, conceptions of privacy, and which trade-offs are generally acceptable. Our results indicate that public attitudes and concerns are heterogeneous and influenced by the context in which sharing takes place. The convergence of key themes such as benefits and future uses point to core concerns that must be centred in regulatory responses to genomic data sharing.
Keyphrases
  • health information
  • social media
  • big data
  • healthcare
  • mental health
  • electronic health record
  • copy number
  • gene expression
  • emergency department
  • machine learning
  • dna methylation
  • deep learning
  • drug induced