Genetic counselor discussing DNA information with two clients at Monash Health

Accessing Genetic Counselling in Australia: Why Wait Times Matter

For many Australians, accessing genetic counselling is an important step in understanding a diagnosis, assessing inherited health risks, planning a pregnancy or deciding whether genetic testing is appropriate. Yet for people referred to public genetics services, waiting for an appointment can sometimes take months, and in some circumstances, considerably longer.

So, why do wait times matter?

Genetics is often time-sensitive

Unlike some areas of healthcare, genetic counselling is frequently connected to decisions that have a limited window of opportunity.

For someone planning a pregnancy, genetic counselling may influence reproductive choices, carrier screening, prenatal testing or decisions about IVF. For a person with a newly diagnosed cancer, genetic testing may help clarify whether there is an inherited cancer predisposition that could affect treatment, surveillance or the health of relatives. In neurological or cardiac genetics, establishing a diagnosis may influence medical management and screening for other family members.

Delays don’t necessarily mean that care will be compromised, but they can mean that important decisions are made without the benefit of specialist genetic information.

Genetic counselling is more than ordering a test

Genetic testing is increasingly accessible, but testing itself is only one part of the process.

As Healthdirect explains, genetic counselling can help people understand the benefits and limitations of testing, their chance of having or passing on a genetic condition, and the possible implications of results for themselves and their family.

A genetic counsellor can also help determine whether testing is actually appropriate in the first place. This is particularly important as genetic testing becomes more complex and increasingly available through different healthcare pathways.

The Australian Government similarly recognises that the level of genetic counselling required depends on the uncertainty surrounding a test, its potential implications and the possible consequences for family members.

Public genetics services play a vital role

Australia’s public genetics services provide an essential service, particularly for people with complex or rare genetic conditions and those who may not be able to access private care. Public hospitals provide care based on clinical need, and Australians with a Medicare card can access public hospital services as public patients.

However, demand for genetic services continues to grow as genetic testing becomes increasingly integrated into cancer care, reproductive medicine, cardiology, neurology and many other areas of medicine.

This creates a challenge: how do we make sure that people can access appropriately trained genetics professionals at the time they need them?

Telehealth can help improve access

One potential solution is telehealth.

Genetic counselling is particularly well suited to telehealth because much of the consultation involves taking a detailed personal and family history, discussing genetic information, exploring options and supporting informed decision-making.

Telehealth can also reduce geographical barriers. Someone living in regional or rural Australia does not necessarily need to travel to a major metropolitan hospital to speak with a genetic counsellor.

For some patients, private genetic counselling may therefore provide an alternative pathway when public waiting times are lengthy, particularly when a clinical decision is time-sensitive.

The goal isn’t simply a shorter wait

At Rosalind Genetics, we believe the goal should not simply be to make genetic counselling faster. It should be to make it accessible when it is clinically useful.

Every person referred for genetic counselling deserves enough time to understand why testing is being considered, what the possible results might mean and how those results could affect them and their family.

Genetic information can have lifelong and family-wide implications. Access to appropriately trained genetic counsellors is therefore an important part of delivering high-quality, patient-centred healthcare.

If you have been referred for genetic counselling and are facing a lengthy wait, speak with your doctor about whether another appropriate genetic counselling service may be available. For some families, accessing advice sooner can make an important difference.

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