In the most recent episode of The Genetics Podcast, Patrick sits down with fellow podcaster and genetic counselor Matt Burgess. Matt is the host of Demystifying Genetics, a show that aims to make genetic science and counseling more approachable. Together, they explore Matt’s journey in clinical genetics, the changing role of genetic counselors, and the ethical issues around topics like gene therapy for ultra-rare conditions.
Matt's journey to the frontlines of genetic counseling
It was during high school that Matt first discovered genetics, and thanks to a science teacher who left to become a genetic counselor herself, he found his path into the profession early on. Over two decades later, he’s worked across rural clinics, major public hospitals, and the pharmaceutical industry, bringing genetics education and counseling to a broad range of people.
The evolution of genetic counseling and the persistent access problem
As genetic testing has become faster, cheaper, and more accessible, the traditional model of genetic counseling, where every test involved lengthy pre-test counseling, has had to evolve. Matt reflects on how clinical genetics used to sit at the end of the care pathway. Now, it’s often at the start, helping guide treatment decisions. But that shift has created bottlenecks: the demand for counselors has exploded, and in many cases, people wait months (or more) for post-test support.
While Matt acknowledges the field’s roots in non-directive, ethics-driven care, he agrees that today, the greater need may be for post-test counseling, helping people understand what their results mean for them and their families.
A rare disease, a rare perspective
Matt’s doctoral research focused on AP4 hereditary spastic paraplegia (AP4-HSP), a rare neurogenetic condition with only around 500 documented cases globally. Through interviews with parents of affected children, he explored their views on gene therapy, a topic fraught with hope, complexity, and ethical tension.
What surprised Matt the most about this research is that many parents said they’d be happy simply halting disease progression, even if intellectual disabilities remained unchanged. Matt and other researchers had expected parents to hope for broader cognitive improvements as well, but this served as a It was a powerful reminder that assumptions, especially in rare disease and precision medicine, must be replaced by conversations rooted in patient and family priorities.
Ethics, AI, and the language of counseling
Matt and Patrick also discuss the challenges of terminology in the field. “Counseling” can be a loaded word, especially for people who associate it with therapy which is so often stigmatized. Matt recalls patients saying, “We don’t want the counseling, we just want the information,” not realizing the two were often the same thing.
And as for the role of AI and large language models, could tools like chatbots help fill the gap in access to genetic counseling? Matt thinks there’s definitely a role for tech when it comes to pre-test education, but when it comes to the post-test conversation, he says, that still needs a human.
Building something new
Today, Matt is founding a new company, Rosalyn Genetics, focused on private counseling and testing services in Australia. He’s also teaching, writing a genetics-based novel, and staying active in global genetics education efforts.
He remains passionate about making genetics more approachable, more human, and more ethical. His podcast, Demystifying Genetics, continues to tackle complex issues like Huntington’s disease, predictive testing, and the business side of biotech, all through the lens of compassion and lived experience.
Listen now:
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