Round 1

Capability Building Workstreams


Ethics, Legal and Social Implications of Genomics

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

QGHA’s Ethics, Legal and Social Implications Workstream will develop a series of guidelines and policies to support a range of these matters including community engagement, consent, research, justice, and the clinical use of genomics.

The overall aim of the project is to ensure the safe delivery of genomic medicine for the people of Queensland.

Deliverables

Community Engagement:

  • Undertake consultations with key stakeholders

  • Develop a consultation plan to engage Rural and Indigenous communities

  • Undertake consultations with demonstration projects

  • Preparation of report

Consent:

  • Undertake consultation

  • Develop recommendations for standardising the consent process

  • Develop a Patient Survey

Genomic Research:

  • Consult with AGHA and MGHA

  • Consult with National Advisory Groups

  • Consult with CRAG

  • Literature and legislation review – biobanking (storage/access/use)

  • Preparation of a report

Justice:

  • Review of access associated challenges for genomic testing in rural and indigenous communities

  • Community Engagement with indigenous and rural community

Health Systems:

  • Consult with AGHA and MGHA

  • Review legal issues – genomic testing

  • Review potential ramifications of genetic testing

  • Preparation of a report

Project Investigators

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

  • Professor Belinda Bennett, Queensland University of Technology (lead)

  • Professor John Devereux, The University of Queensland (lead)

  • Professor Karen Hussey, The University of Queensland (lead)

  • Dr Fiona McDonald, Queensland University of Technology

  • 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

Ethics, Legal and Social Implications of Genomics Factsheet [pdf]