Michelle Stewart is a genetic counsellor for the Murrumbidgee Health Service, who also represented Australia at the Sydney Olympics.
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Michelle, what is your role?
When I tell people what I do, the first thing they often say is ‘what’s that’ because it’s one of those new areas that is evolving and unless you’ve seen one, you don’t really know what it is.
So, the way I describe it is: I see individuals and families if there’s a family history of a particular illness, whether it’s a chronic health problem, something that effects children, cancers – we see a lot of familial cancers and I think Angelina Jolie had a lot to do with that in 2013.
We’ve kind of dubbed her big announcement the ‘Angelina Jolie effect’ because of the huge gain in public awareness of genetic conditions. Referral rates worldwide went through the roof. That would be probably 70 per cent of my caseload: familial cancer and predominantly breast cancer.
But I see from pre-natal – so pregnancies where there is a risk of a condition – all the way through to end of life, where there’s a neurological condition. Huntington’s disease comes to mind.
I provide people with information about what their risks are of inheriting those conditions and help guide them through whether that’s information they would like to have confirmed, whether it’s with genetic testing or not. I certainly don’t make the decision for them, I just give them all the information to help them do what is best for them and their families.
The days of ‘one size fits most’ are changing. A lot of the treatments, especially in cancer, are based around genetics.
How did you get into this role?
I have a science degree and I majored in psychology. The role needs to have a medical or scientific element there, but it also needs therapeutic, counselling skills as well. It’s quite a blend. A lot of what we do is give you information, then explore how that information will affect people, their lives and their family and navigate through some of the pitfalls of dynamics of the family.
I often say to families ‘there is no such thing as a normal family’. I may have had one once, where it was an open book and everyone communicated with each other, but that’s not the norm. Most families have fractures, perhaps, in relationships that can make communication really difficult.
But we often know that it’s important to have this information shared with families because it can either prevent other people being diagnosed with the cancer in some cases or helping family planning if it’s something the child can be born with and there’s a risk.
Why a sports psychologist?
I’m originally from Melbourne. I went to Canberra to train at the Institute of Sport in a previous life and after my time at the institute, I decided to go to university.
I did archery. I was lucky enough to compete at the Sydney Olympics, which was an amazing experience, and then after that went ‘well what am I going to do with my life’, so I went to university.
I think archery gave me the attributes to be a good genetic counsellor. There is a real need in both to be focused.
It sounds like you studied with that role in mind?
No, I didn’t. I went to uni to be a psychologist. I wanted to be a sports psychologist.
But there was the buzz at university at the time, everything was about genetics.
One or two of my peers were talking about genetic counselling, so I looked into it. I really enjoyed those lectures a lot more than my psychology lectures.
I was really interested in my family history and had done a little bit of genealogy myself. I also thought it was a growing area, so I would always have a job.
One of my lecturers once said ‘in the last hundred years, the advances in health have been medicine-based, the next hundred years, the advances will be in genetics’.
I thought that was quite exciting.
Sometimes there is a lag between the discoveries about genes and when we can use that information in a clinical setting, but it’s an exciting time, not only in genetics but it health care.
It’s becoming more personalised. The days of ‘one size fits most’ are changing.
A lot of the treatments, especially in cancer, are now based around genetics.
So, cancer is what you see most often?
Yes, again I think Angelina Jolie had a lot to do with that, and that’s great. We probably need more of that public awareness with other conditions.
I often have people say ‘I didn’t know you were here’, so that awareness is good.
We have a geneticist who comes down from Sydney once a month, but there can be a waiting list.
There is a lot of focus on trying to build up the workforce because there is an awareness that this is an area that is going to expand.
You must see some heartbreaking moments and some joyous moments?
Yes, you do get a bit of a mixed bag. It can be quite a challenge when you are seeing families where there are some pretty unpleasant genetic conditions that have been discovered in those families.
There is often a lot of resilience in those family units, because they have been down the path already before they come to genetics where they can see there might be problems in the development of their children and things like that.
People want a diagnosis, but that can also take away any kind of hope that they will ‘grow out it’, it’s only short term condition or that there will be a cure.