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Genomic Partnerships Document Launch
The day has arrived to formally launch the Genomic Partnerships document. We are proud to present Genomic Partnerships: Guidelines for genomic research with Aboriginal and Torres Strait Islander peoples of Queensland.
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. For details on the project and its development, please refer to the GenetiQs webpage.
The Genomic Partnerships document is an important step in a much larger movement that is empowering the research and Aboriginal and Torres Strait Islander community to enter into discussion about genomic research. This is the first guideline of its kind, serving to provide practical advice to researchers about the importance of partnering with Aboriginal and Torres Strait Islander peoples to propose, develop and deliver genomics research in Queensland.
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Genomics has the potential to revolutionise the way health care is delivered. Currently, there are research programs at the state and national level that are enabling the introduction of genomics into Australian healthcare system.
It has been identified that Aboriginal and/or Torres Strait Islander people are at risk of being ‘left out’ of these developments. One reason is that researchers are failing to engage with Indigenous communities due to a lack of awareness on how to conduct genomics research in such settings.
The GenetiQs Project is a partnership between QIMR Berghofer and Queensland Genomics (QG) which aims to develop guidelines to assist researchers when undertaking genomic research in collaboration with Aboriginal and/or Torres Strait Islander Queenslanders.
The project team consulted stakeholders and experts with professional standing in Aboriginal and/or Torres Strait Islander health and research and other community members, in a series of facilitated workshops and forums which informed the development of the proposed guidelines and supporting resources. Workshop participants were also invited to a follow-up workshop to review and discuss the guidelines in February 2019, to inform the final version expected to be released mid-2019.
GenetiQs Project Updates
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GenetiQs project in a nutshell
To consult, engage and partner with community, policy, health service and research stakeholders in the state of Queensland to develop resources to support the development of proposals for genomic research involving Aboriginal and/or Torres Strait Islander people.
This project will:
- Develop guidelines, information and resources for the ethical conduct of genomic research involving Aboriginal and/or Torres Strait Islander Queenslanders; and
- Document and evaluate the consultation and engagement methods used to develop the guidelines (process evaluation);
- Conduct a review of literature on ‘best practice in engagement and consultation when developing health policy for the benefit of Indigenous communities in Australia’, to inform the engagement process.
We anticipate the following major benefits:
- Decrease the barriers for researchers to undertake genomic research which may benefit Aboriginal and/or Torres Strait Islander people
- Increase participation of genomic research with Aboriginal and/or Torres Strait Islander Queenslanders.
THE TEAM IN ACTION
First Round of Consultations
We have completed the first round of consultations and engagements across Queensland including Brisbane, Toowoomba, Rockhampton, Townsville, Cairns, Weipa and Thursday Island. Since then, we have met with the Project Steering Committee and have started collating the responses and feedback from the consultations to inform the development of the guidelines. The follow-up ‘confirmation’ workshops will occur throughout February 2019 giving an opportunity for the experts and community to review the draft guideline and provide further feedback.
Second Round of Consultations
The GenetiQs team returned for a second round of consultations held from 4 to 21 February 2019, providing an opportunity for our stakeholders and community to review and provide their feedback to inform the development of the final document.
During these visits, we engaged with over 60 participants at seven workshop consultations across Queensland. Participants ranged from clinicians, policy makers, Indigenous health workers, researchers, community members, health service executives and research ethics committee members. We received an overwhelmingly positive response and support from participants on our current work and future directions. The suggestions and feedback received will help shape the final document.
Partnership and Leadership
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 Gregory Pratt, Manager for Aboriginal and Torres Strait Islander Health Research
- Queensland Genomic Health Alliance, Dr Nicola 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
To see the full list of our steering committee and their affiliations, click here.
MEET THE PROJECT TEAM
Manager for Aboriginal and Torres Strait Islander Health Research
Head of Medical Genomics
QIMR Berghofer Deputy Director and
Head of Cancer Control
Head of Genome Informatics
Project Officer, Aboriginal and Torres
Strait Islander Health Research
Research Officer, Medical Genomics
Project Officer, Aboriginal and Torres
Strait Islander Health Research
If you have any queries or need more information on the project, please feel free to contact Sid Kaladharan at the GenetiQs team email address below.
Dr Sid Kaladharan
QIMR Berghofer Medical Research Institute
(07) 3845 3883
Judy Watson's Water Memory reflects the many histories of the QIMR Berghofer site, which is partially viewed here in the header and footer 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.