The use of genomics has the potential to transform healthcare, but new approaches to diagnosing and treating disease also brings potential ethical, legal and social issues.

Queensland Genomics Ethics, Legal and Social Implications Workstream worked towards developing a series of guidelines and policies to support a range of these matters including:

  • community engagement
  • consent
  • research
  • justice
  • the clinical use of genomics
Project Deliverables

To ensure Queensland is equipped to apply medical genomics to everyday healthcare, a number of capability building projects were funded in Round 1.

Community Engagement
  • Consult with key stakeholders
  • Develop a consultation plan to engage Rural and Indigenous communities
  • Consult with Clinical Demonstration Projects
Consent:
  • Consult with stakeholders
  • Develop recommendations for standardising the consent process
  • Develop and deploy a Patient Survey
Genomic Research:
  • Consult with Australian Genomics Health Alliance and Melbourne Genomics Health Alliance
  • Consult with National Advisory Groups
  • Consult with Queensland Genomics Community Advisory Group
  • Conduct a literature and legislation review on biobanking (storage/access/use)
Justice:
  • Review of access associated challenges for genomic testing in rural and indigenous communities
  • Engage with indigenous and rural communities
Health Systems:
  • Consult with Australian Genomics Health Alliance and Melbourne Genomics Health Alliance
  • Review legal issues – genomic testing
  • Review potential ramifications of genetic testing
Project Investigators

Project leaders engage with and draw upon the expertise of partners within universities, research institutes and hospital and health services around Queensland.

Dr Nic Waddell, QIMR Berghofer Medical Research Institute (Co-lead)

Professor Belinda Bennett, Queensland University of Technology (Co-lead)

Professor John Devereux, The University of Queensland (Co-lead)

Professor Karen Hussey, The University of Queensland (Co-lead)

Dr Fiona McDonald, Queensland University of Technology

Dr Caitlin Curtis, The University of Queensland

Dr Marie Mangelsdorf, The University of Queensland

Dr Miranda Vidgen, QIMR Berghofer Medical Research Institute

Professor David Whiteman, QIMR Berghofer Medical Research Institute

Dr Julie McGaughran, Genetic Health Queensland

Dr Sashika Naidoo, QIMR Berghofer Medical Research Institute

Greg Pratt, QIMR Berghofer Medical Research Institute

Professor Des Butler, Queensland University of Technology

Associate Professor Tina Cockburn, Queensland University of Technology

Dr Angela Daly, Queensland University of Technology

Dr Andrew McGee, Queensland University of Technology

Professor Matthew Rimmer, Queensland University of Technology

Dr Mal Smith, Queensland University of Technology

Dr Shih-Ning Then, Queensland University of Technology

Dr Jane Jacobs, Queensland University of Technology

Professor Matt Brown, Queensland University of Technology

Associate Professor David Morrison, The University of Queensland

Professor Xue Li, The University of Queensland

Professor Simon Bronitt, The University of Queensland

Professor Luke Connelly, The University of Queensland

Dr Kim Nichols, The University of Queensland

Dr Julian Lamont, The University of Queensland

Dr David Rowell, The University of Queensland

Associate Professor Andrew Crowden, The University of Queensland

Professor Julian Savulescu, University of Oxford

Associate Professor Ainsley Newson, The University of Sydney

Professor Margaret Otlowski, University of Tasmania

Professor Dianne Nicol, University of Tasmania

Professor Emma Kowal, Australian National University

Dr Nikola Stepanov, James Cook University

Round 1 – Capability-building projects

Your blood, your story
Community Engagement

Genomics resources for Aboriginal & Torres Strait Islander Peoples

News

Round 3 Investment

Infectious disease

Genome sequencing shown to curb disease outbreaks