Genetic experts call for more frontline staff to combat long waits for support

 

NATIONAL: Human Genetics Society of Australasia Ltd (HGSA) is calling on all major parties and community independents to commit to expanding access to genetic health services and genetic risk assessments for Australians through the Medicare Benefits Schedule (MBS) as part of the 2025 Federal Election.

Genetic and genomic testing is important in guiding decision making and treatment pathways for people with common conditions, including cancer and heart disease. In addition, rare diseases affect 8% of people in Australia and are often devastating for patients and their families. Over 80% of these conditions are caused by genetic variations. Genetic health services are crucial for diagnosis, management, and providing support to families affected by rare disease.

At present, no MBS item number exists to allow for professional genetic counsellor risk assessments in community settings. Due to this and an overburdened public healthcare system, the wait to access genetic counsellors can be up to 36 months.

HGSA is the professional membership organisation representing the human genetics workforce including genetic counsellors, clinical geneticists, laboratory professionals, academics and researchers.

Genetic risk assessments are a pivotal part of modern genomic medicine, and can support an improved understanding of an individual’s genetic make-up. This includes:

  • individuals learning if that they are a carrier of a genetic variant which may increase their chance of developing certain health concerns;
  • Informing other family members of this increased chance to enable their assessments to be completed also;
  • Assisting couples to learn if they have an increased chance of having a child with a severe health condition.

All of these genetic risk assessments aim to provide information so individuals, couples and families can make informed decisions about their personal and future healthcare.

Specialist allied health professionals known as genetic counsellors, combine genetics knowledge with health communication and counselling skills to support people and families to understand the implications of their genetic assessments and test results. Seeing a genetic counsellor helps people incorporate the information into their healthcare and life plans.

Cost benefit analysis provided to Government shows that for every dollar spent on genetic counselling, there is a 250% return on investment which can provide additional benefits to the Australian population.

Genetic counsellors work in all areas of health, including clinical, research, academic, education, policy, industry and laboratory settings. They are key conduits to enable individuals and families to access genomic services which can be of benefit to them through some of the most consequential health decisions they will make.

 At a projected cost of only $10 million per year, an MBS item number would improve the reach and benefit of professional genetic counselling for families of those receiving genetic diagnoses, individuals concerned with their own genetic risk and couples planning their families.

HGSA’s proposal of an MBS item number for genetic counsellors aligns with multiple recent health announcements by the Australian Government, including the $573 million proposed for women’s health, and the $8.5 billion announced for strengthening Medicare by increasing bulk billing services.

 

Quotes attributable to HGSA President Associate Professor Yemima Berman

“No family should be expected to make complex and difficult decisions about genetic testing, results, or management without timely access to expert advice.”

“More equitable access to genetic counselling would support the delivery of genomic health initiatives, which support women and families, and can be delivered in primary care settings alongside general practitioners and other health care practitioners.”

“It is no secret that genomics services in Public Hospitals are overstretched, with wait times extending up to 3 years in some services. Delaying action in addressing service delivery issues until after the establishment of Genomics Australia, risks increasing inequity and uncertainty about the future of genetic services in Australia.”

“By supporting the HGSA’s proposal for an MBS item number for genetic counsellors, all sides of politics will play a vital role to improve access to genomic health services for all Australians.”

Media contact:
Mathew Langdon, [email protected], 0400 645 779

HGSA election platform MR 3 April 2025

 

Genetic counselling as an essential component of genomic medicine’s safe and effective implementation. We strongly support HGSA’s call for an MBS item number for genetic counselling.

- Guard collaborative

“They organised genetic testing to confirm the diagnosis and explained what would happen and how long it would take. All this helped put our minds at ease and set us
off on the right track at the start of our journey.”

– Parent of a child with a rare genetic condition

Greater access to genetic counselling services outside of hospital settings is essential. 

Expanding these services would ensure that individuals and families receive consistent, accurate information and timely support, regardless of their location or medical pathway.

Genetic counselling is an essential service that provides families with clarity, guidance, and confidence in the face of life-changing diagnoses. Expanding access and improving delivery models would empower more families to make informed decisions and feel supported throughout this daunting process.

- Danielle and Leon Green

“My child also showed up with a rare duplication... but as our paediatrician put in the test, no follow up by genetics was available to us then, and I was not offered genetic counselling on
my own results... So I have had no idea how to prevent, treat or monitor any complications that may be present or arise from these duplications, nor have I been given any information on them. The MBS item being added would certainly be beneficial when thinking of my family!”

– Parent of a child with a rare genetic condition

“Having genetic testing and understanding the impacts of results are two very different things, so having skilled clinicians to help guide decisions is essential.”

“There is on average a two year wait for these services around the country, although it’s even longer in some areas. We believe the model proposed by the HGSA in their submission will help
provide more equitable access to care throughout Australia.”

“Increased access to genetic counselling services will only bring benefits to the whole community not just the people we support who are living with a genetic condition. Genetic counsellors provide patients with knowledge and support that can impact their entire lives.”

- Children's Tumour Foundation

“We have had three appointments, and the genetic counsellor was great for where to find details and help on syndromes and also for getting our extended family assistance in diagnosis as most GPs and specialists don't have enough knowledge of what to ask, test or where to refer for us on to.”

– Parent of a child with a rare genetic condition

Rare diseases are estimated to affect two million Australians, and 80 per cent of rare diseases are of genetic origin. Therefore, advances in genomic medicine have been a game-changer for the detection and treatment of rare diseases. Many of the key priorities, actions and implementation steps in the Action Plan highlight the importance of genomic medicine and, in particular, the need for genetic counsellors

- Rare Voices Australia