Genetic Health Pathways

Improving access to Genetic Health Services for
Aboriginal and Torres Strait Islander Queenslanders’

DOCUMENT

Work on the Genetic Health Pathways project has now been completed.  The document titled: Integrated Genetic Health Care: Improving Access for Aboriginal and Torres Strait Islander People to Clinical Genetic through Partnership and Primary Health Leadership has now been produced and can be accessed below:

BACKGROUND

Advances in genomic technologies promise to revolutionise healthcare. The Federal and Queensland governments have made a significant investment to embed genomics into healthcare. Primary healthcare services will experience increased responsibility for referring patients to genetic testing and counselling services.

With the advent of genetic research and a focus on impact at a patient level, there is growing emphasis and importance on realising and articulating how research translates to impact and influence of health outcomes and benefit. There is a risk that Aboriginal and Torres Strait Islander people will be ‘left out’ of genetic health services and not sharing in anticipated health gains.

In particular, there is a real concern that the gap in life expectancy experienced by Aboriginal and Torres Strait Islander people will grow as non-Indigenous people live longer and healthier lives. It is essential we identify barriers to Aboriginal and Torres Strait Islander peoples’ engaging with genetic health services.

PREVIOUS PROJECTS

This Project (Genetic Health Pathways) has built on the work of previous Queensland Genomics funded projects:

  • GenetiQs served to confirm the views of Aboriginal and Torres Strait Islander Queenslanders with respect to interest and preferences for community involvement in genomic research through the development of the research guidelines document: Genomics Partnerships: Guidelines for genomic research with Aboriginal and Torres Strait Islander peoples of Queensland.
  • IG-HeLP responded to the need to develop and disseminate Aboriginal and Torres Strait Islander genomic health literacy resources that describe the patient journey, referral, access and benefits and risks associated with genetic testing and counselling.

GENETIC HEALTH PATHWAYS IN A NUTSHELL

QIMR Berghofer in collaboration with QAIHC (Queensland Aboriginal and Islander Health Council) and GHQ (Genetic Health Queensland) facilitated a series of workshops. The workshops supported, consulted and engaged Aboriginal and Torres Strait Islander Community Controlled Health Organisations (ATSICCHOs) of Queensland to identify preferences and recommendations for a preferred integrated care model and referral pathway to improve access to genetic health services GHQ.

Workshops were held at nine local ATSICCHOs across Queensland these included: Toowoomba, Brisbane, Mount Isa, Townsville, Cairns, Thursday Island, Napranum, Rockhampton and Bundaberg. The project team sought advice from service stakeholders and the community about barriers and enablers to access, quality experience of genetic testing and counselling for Aboriginal and Torres Strait Islander Queenslanders.

ATSICCHOs champion patient access to quality healthcare for Aboriginal and Torres Strait Islander peoples. Partnership between ATSICCHOs, the public hospital and health services that is GHQ has enabled development of the Integrated Genetic Health Care: Improving Access for Aboriginal and Torres Strait Islander People to Clinical Genetic through Partnership and Primary Health Leadership document, which should lead to improved access to sensitive, appropriate, and quality health genetic services for Aboriginal and Torres Strait Islander Queenslanders.