GenetiQs Project

Genomics Partnerships: Guidelines for genomic research with Aboriginal and Torres Strait Islander peoples of Queensland

 

Genomics in clinical practice is poised to be the next healthcare revolution with significant investment in research and clinical implementation occurring across Australia: it has the potential to shape Australia’s health future.

To date, there has been limited involvement of Aboriginal and Torres Strait Islander peoples in genomic research due to their experience of past transgressions in conducting research. If opportunities for cultural inclusivity in genomic research do not increase, the prospect of equitable access to the healthcare benefits of clinical genomics will be limited.

To ensure genomics benefits all Australians, we have focused on developing recommendations for best-practice genomic research when engaging and partnering with Aboriginal and Torres Strait Islander Queenslanders. Our recommendations are outlined in this document, Genomic Partnerships: Guidelines for genomic research with Aboriginal and Torres Strait Islander peoples of Queensland.

 

Genomic Partnerships Document

Development of Genomic Partnerships involved extensive stakeholder engagement to develop recommendations and identify best practice when working with Aboriginal and Torres Strait Islander peoples on genomics research projects. Areas addressed in this document include:

• engaging with communities
• partnering to develop a research proposal
• ethical and social constraints
• collecting and storing samples
• data and reporting results

Please click on icon below to download the Genomic Partnerships document:

If you want a printed copy to be delivered please email: Genetiqs@qimrberghofer.edu.au

 

Partnership & Leadership

Our team would like to thank everyone involved, in particular, community, expert stakeholders, and our partners who contributed generously to the discussions that informed the development of this document. Thanks to our funding partners, Queensland Genomics and QIMR Berghofer who provided support and help at every step of the journey.

Our project team is guided by a group of 12 Project Steering Committee (PSC) members comprised of leading investigators, academics, policy, clinicians and researchers who are well regarded for their work in the Indigenous health sector.  The following PSC members regularly meet with our team to guide us in the process of developing this guideline.

  • QIMR Berghofer Medical Research Institute, Mr Greg Pratt, Manager for Aboriginal and Torres Strait Islander Health Research
  • Apunipima Cape York Health Council, Professor Yvonne Cadet-James, Research Coordinator
  • Queensland Genomic Health Alliance, Dr Nic Waddell, Head of Medical Genomics at QIMR Berghofer Medical Research Institute
  • James Cook University, Dr Felecia Watkin Lui, Director of Research Education, Indigenous Education & Research Centre;
  • University of Queensland, Dr Maree Toombs, Director of Indigenous Health;
  • Central Queensland University, Professor Roxanne Bainbridge, Director Centre for Indigenous Health Equity Research;
  • Deakin University, Professor Emma Kowal; ARC Future Fellow, Alfred Deakin Institute;
  • University of Southern Queensland, Ms Raelene Ward, Senior Lecturer, School of Nursing and Midwifery;
  • Central Queensland University, Professor Adrian Miller, Pro Vice-Chancellor of Indigenous Engagement and BHP Chair of Indigenous Engagement;
  • Department of Health, Queensland, Dr Daniel Williamson, Manager, Performance and Accountability Team, Aboriginal and Torres Strait Islander Health Branch;
  • Queensland Aboriginal & Islander Health Council (QAIHC), Ms Angela Young, General Manager, Policy;
  • Department of Health, Northern Territory, Dr Sean Taylor, Executive Director Aboriginal and Torres Strait Islander Health Practitioner, Top End Health Service;
  • Apunipima Cape York Council, Mr Paul Stephenson, Chief Executive Officer

 

Judy Watson’s Water Memory reflects the many histories of the QIMR Berghofer site, which is partially viewed here in the header of this webpage. The imagery has been inspired by the Traditional Owners of the land—the Aboriginal people who resided on this land—the Turrbal and Jagera people. The Water Memory piece can be viewed in its entirety from the foyer of QIMR Berghofer Medical Research Institute.