Login / Signup

Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.

Miranda E VidgenSid KaladharanEva MalacovaCameron HurstNicola Waddell
Published in: BMC medical ethics (2020)
Most participants were willing to share their genomic data from medical records with researchers, as long as permission for use was sought. However, the existing policies related to this process in Queensland do not reflect participant expectations for how this is achieved, particularly with anonymous genomics data. This inconsistency may be addressed by process changes, such as inclusion of research in addition to clinical consent or general research data consent programs.
Keyphrases
  • electronic health record
  • big data
  • healthcare
  • public health
  • emergency department
  • gene expression
  • cross sectional
  • dna methylation
  • data analysis
  • single cell
  • artificial intelligence
  • deep learning