Genetic counsellors at Genetic Health Queensland offer support to people and their families after they have learned they have a genetic condition.
In Bhavya Vora’s professional life as a genetic counsellor, he can play a short cameo role in someone’s life yet leave a profound impact.
He can sit with a person who has learned they have a risk of developing a genetic condition such as Huntington Disease and help them decide the next steps in their life.
“I may only see the person for one counselling session,” Bhavya says from his office at Genetic Health Queensland in Brisbane.
“That one session could be all that person needs to decide how they want to proceed with their genetic testing odyssey.
“And then for other people, they may need a number of counselling sessions to process and understand the impact of the genetic condition, for themselves as well as their family.”
Bhavya is the Principal Genetic Counsellor at Genetic Health Queensland, where he leads a team of genetic counsellors within Queensland’s public health system.
While some of his team are based within various regional hospital and health services such as Townsville, Wide Bay, and Sunshine Coast, a majority are based at the Royal Brisbane and Women’s Hospital.
The team at Genetic Health Queensland including genetic counsellors and geneticists. Bhavya is pictured fourth from the right in the front row.
It’s a niche profession, with only about 400 genetic counsellors in the Australasian region.
Twenty of those are at Genetic Health Queensland, where the bulk of their work is counselling people either diagnosed with or at risk of inheriting familial cancer conditions.
In addition, they also offer genetic counselling to those patients who have recently learned that they have a genetic condition and need support in understanding and processing that information.
Sometimes the condition can be rare and doesn’t have a cure, which can be incredibly difficult for the patient to absorb and make sense of.
This can include a rare, inherited genetic disorder such as CADASIL, a progressive thickening of the brain's blood vessel walls, leading to reduced blood flow and neurological issues like stroke, dementia, and migraines with aura. It is a progressive degenerative disease that has no cure.
“In those moments, the genetic counsellor will sit with the person and help them process that they have this rare disorder,” Bhavya said.
“We don’t tell the patient what they must do or how to live their lives. We help guide them as they make decisions for themselves and work with the individual to identify ways to integrate this new diagnosis in their lives.”
While it is rewarding to be there for the patients and support them through difficult emotions, Bhavya concedes the role of a genetic counsellor is not easy.
There are times when Bhavya and his team are faced with supporting people who are in truly difficult circumstances such as deciding whether to continue with a pregnancy.
“These situations are complex,” Bhavya said.
“Parents who have just learned their unborn child has a genetic disorder and they need to make a fast decision of whether to continue or end the pregnancy.
“It’s a confronting situation for parents and can be extremely difficult for them to make any decision.
“There can be so many issues for them to navigate and think about, such as the medical consequences, availability of interventions, the realisation that the genetic condition exists in their DNA, and, for some, there are ethical concerns.”
The professional conduct of a genetic counsellor in these scenarios is to remain non-judgemental.
“We’re not there to tell someone what decision to make,” Bhavya said.
“We provide everyone who comes to us a safe space to talk and balanced information about their options and the next steps they can choose to take.”
It’s not all doom and gloom either. With advancements in genetic technology, there has been various clinical trials, registries and patient support resources that the team of genetic counsellors tap into.
This provides their patients with hope, options and something they can get involved with. Recently a member of Bhavya’s team presented her poster of their work in prenatal genetic counselling space at the Herston Health Precinct Symposium.
“We spend a lot of time reflecting on cases, working on improving our skills and learning from each other locally and also attending various conferences nationally,” Bhavya said.
To see a genetic counsellor at Genetic Health Queensland, patients require a referral from their GP.
If you or someone you know has been diagnosed with a genetic condition, visit your GP who can make a referral to genetic counselling.
More information about Genetic Health Queensland and the referral process is available on the website.