Star Scientist of the Month - Dr Renee Johnson

"Building relationships with the families and putting information together to help future generations is such an incredible part of the journey."

28 August 2021

Our Star Scientist for August, Dr Renee Johnson from the Inherited Heart Disease Laboratory, has a special role working with the families of those with heart conditions.

Dr Renee Johnson says she’s always been interested in science – sneaking off to do science experiments during maths class in primary school - but has found herself in an unconventional position at the Victor Chang Cardiac Research Institute in the Inherited Heart Disease Laboratory.

“My official title is clinical research coordinator, but my role pretty much covers anything we do with our families.

“I talk to a large mix of patients - often it’s someone who has been newly diagnosed with an inherited heart condition and they just want more information. It can be the first time they've had a conversation about how it might affect other family members as well.

“I’m involved in patient recruitment too, where I explain our study, answer questions, and take a family history, as well as clinical information like cardiac history and lifestyle factors. If a patient does get a genetic result, I help them understand what that means and get information to other family members, as well as access cardiac and genetic testing.

“A family may have experienced a traumatic event such as a sudden death of a family member or a heart transplantation, and for these families often I spend more time with them, counselling them and helping them to access further support if that’s what’s needed.”

Dr Johnson's path to the Victor Chang Cardiac Research Institute

At the Institute since 2013, Dr Johnson says her journey to her current job wasn’t linear and evolved over time.

“I started out with a degree in biological science at Newcastle University, before doing my PhD in reproductive medicine, looking at preterm labour and birth. Then I went to the United Kingdom, where I did my postdoc in cancer biology, which I enjoyed.

“We were young and from all over the world, so it was a fun experience. There was a lot of collaboration, there was a lot of camaraderie, and even if you turned up to do an experiment at 2am in the morning, there’d still be people at the lab.”

Dr Johnson then headed back to Australia, wanting to do something “a little different”.

Moving home

Her move to do a Masters in genetic counselling at the University of Sydney saw her on the path of looking at hypertrophic cardiomyopathy, which is a disease where the heart muscle becomes abnormally thick. This work eventually saw her land in Professor Diane Fatkin’s Inherited Heart Disease lab.

Professor Fatkin says the broad range of skills Dr Johnson brings to the lab makes her an incredibly valued team member.

“Renee is really unique because she knows the science but she also has the warm people skills needed for her role. Usually, you get postdocs who are good at the science, or you get the genetics counsellors who are great at family management, but Renee’s excellent at both. She’s a very special and rare person,” says Professor Fatkin.

The team at the lab has spent the last five or six years working on the genetics of dilated cardiomyopathy (DCM), which is a disease of the heart muscle, where the heart chambers become enlarged and affect the heart’s ability to pump.

“I've been going through and getting results out of that data and returning it to the families. Probably the biggest part of that has been looking at what risks, in addition to the genetics, our families have,” says Dr Johnson.

“For instance, we are looking into why some people get DCM really early, while others with the same genetic variant remain quite healthy until much later in life,” she adds.

Dr Johnson and the lab also have a large cohort of families affected by atrial fibrillation (AF), a disorder of the heart’s electrical activity that can lead to stroke, heart failure and even early death, and that has been a key part of their research in the last few years.

“The genetics of atrial fibrillation really isn't that well understood. But Diane and a group of collaborators got an exciting Heart Foundation grant this year which we're planning to use to really expand our AF genetics reach. That means looking for rare and common AF variants with our families, but also expanding that to an athletes’ cohort as well, which is a group who have developed AF after a lifetime of competitive sporting activity.

“We hope the information gained in this research could predict who is likely to have heart problems in the future.”

Developing relationships with families

Dr Johnson says she feels so lucky in the work she gets to do, and the chance to combine research with such long-term interactions with families.

“Ordinarily if you're doing genetic counselling in a clinical setting, you might see a family just once or twice. Here, we've had families that have been with us since Diane started the research back in the early 2000s. They've been part of the research family for a long time and often we get to see multiple generations and get the chance to build relationships with so many of them. Being able to find information that can help future generations in a family is really rewarding. It’s so wonderful to be part of that journey.”

Professor Fatkin says it is this care with patients, as well as colleagues, that makes Dr Johnson so exceptional.

“Renee’s so positive and warm and just a fountain of information. She’s such a great help to the younger team members too with her wisdom and knowledge and always makes the time to support them. She’s really just a pleasure to have around,” Professor Fatkin says.

Dr Johnson says she’s been fortunate to have lots of different help and support along the way herself.

“I’ve been lucky to have some amazing influences over my life and career so far that have really helped me in a lot of different ways. My dad's always been pretty interested in science and so I think he really encouraged my interest when I was younger.

“Then as I went through life, I found different people influenced and helped me in different ways. My PhD supervisor was incredibly supportive and was good at pushing me to advance, while my postdoc supervisor, for instance, was a lot more hands-off and that was what I needed at that time because it meant I became more independent.

“At the Institute, Diane’s been brilliant in her support and helping make sure I advance. If you are lucky enough to have people assist you along the way, it definitely helps.”

Dr Johnson says those wanting to take a similar path should always pursue their interests, not be afraid to change direction and be ready to jump at any potential career breaks that come their way.

“It’s a great vocation but I think it is also important to realise the journey can be hard and you do need to take advantage of any support that is there. When I first started out, you were really left to your own devices. If you were lucky to have a good supervisor, it made such a difference, but otherwise you were pretty much out in the wilderness. Now, there's a lot more mentorship available, so I’d recommend definitely taking advantage of any of those opportunities that come along.”

Away from the office

Dr Johnson hopes to eventually get back up into the sky, after learning to fly a plane some years ago.

“I had a moment of madness when I was doing my PhD,” she laughs.

She already has a licence to fly solo in a local training area, and the next step is gaining her private pilot’s licence.

“I was working on that but recently just haven’t had the time or the money to complete it. Maybe sometime soon,” she adds.

Dr Johnson says when she’s not at work, she enjoys reading, and a lockdown skill she’s back doing this year is amigurumi.

“It’s a Japanese art of crocheting small, toy animals, which I find very relaxing. I usually enjoy baking too but because I’m by myself in lockdown I’ve had to stop that. I can't afford to keep baking just for myself.

“But when things get back to normal, I’m looking forward to getting to Newcastle to see my family and friends there. We love to get together to cook and eat and just hang out. That’s when I’ll start baking again.”