PODCAST · science
Demystifying Genetics
by Matt Burgess
This is a podcast series called Demystifying Genetics where I, Dr Matt Burgess, Genetic Counsellor interview other genetic counsellors, people working in genetics or people affected by genetic conditions. We chat about human clinical genetics, genetic counselling, ethics, pyschosocial issues and more. To contact me, please reach out at matt at insightgenomica dot au.
Episodes
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Becoming a Genetic Counselor: Identity, Mentorship, and Belonging. Demystifying Genetics with Rachel Mills.
Host Matt Burgess talks with Dr. Rachel Mills, a genetic counsellor and educator, about her PhD work on professional identity, how conferences and mentorship shape early-career genetic counsellors, and the changing roles of teaching, research and advocacy in the field. The conversation covers...
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From Navy Decks to Genetic Docs: One Man’s AFAP Journey. Demystifying Genetics with Dan Shockley (Favourite gene: APC).
Host Matt Burgess speaks with Navy veteran Dan "Dry Dock" Shockley, who was diagnosed at 51 with attenuated familial adenomatous polyposis after routine screening revealed hundreds of polyps. Dan shares his experience with genetic testing, major surgeries including a permanent ileostomy and...
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From Values to Gene Therapy: Leading the Future of Genetic Counselling. Demystifying Genetics with Sara Pirzadeh - Miller. (Favourite gene: CDH1)
Host Matt Burgess speaks with genetic counsellor and NSGC president Sara Pirzadeh‑Miller about her early research on values in genetic counselling, how life experience shapes practice, and the evolving role of genetic counsellors. They also discuss the clinical challenges of the CDH1 gene, risk...
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Genetic Counsellors Take the Lead: From Mackenzie’s Mission to National Genomics. Demystifying Genetics with Kirsten Boggs
Senior genetic counsellor Kirsten Boggs discusses building GCR Connect, the rise of genetic counsellor-led research, and lessons from Mackenzie’s Mission - Australia’s national reproductive carrier screening study. We explore practical challenges and ethics of large-scale genomic screening, the...
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PGT Unpacked: Ethics, Linkage and Hard Choices in Reproductive Genetics. Demystifying Genetics with Erica Pai
In this episode host Matt Burgess speaks with Canadian genetic counsellor Erica Pai about pre‑implantation genetic testing (PGT). They discuss how PGT has evolved, technical and ethical challenges (including difficult genes like CYP21A2), the continuing role of linkage analysis in embryo testing,...
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When Genes Meet Justice: Kidney Risk, Gene Therapy, and Community Care. Demystifying Genetics with Barbara Harrison
Host Matt Burgess speaks with Assistant Professor Barbara Harrison of Howard University about APOL1-related kidney disease, sickle cell disease, and the role of cultural awareness in genetic counselling. They discuss health inequities, community trust around new therapies like gene editing, and...
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When Genes Guide Care: BRCA, Rapid Testing and Real Choices. Demystifying Genetics with Mary-Anne Young (Favourite Genes BRCA1&2).
Dr Matt Burgess talks with Mary-Anne Young about the real-world impact of genomics on healthcare and genetic counselling. They cover BRCA1/2 history, rapid testing, integration with oncology, and using polygenic risk to personalise care. The episode explores family systems and counselling...
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When Genes Meet Heart: Inside Cardiac Genomics. Demystifying Genetics with Jodie Ingles (Favourite Gene: MYH7)
Host Matt Burgess talks with Dr Jodie Ingles, a leading cardiac genetic counsellor and researcher, about inherited heart conditions, supporting families after sudden cardiac events, and translating genomic discoveries into clinical care. The episode covers variant classification, health equity…
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Huntington’s Unlocked: Ethics, Exclusion Testing & New Gene Therapies. Demystifying Genetics with Sandra Peacock (Favourite Gene: HTT).
Genetic counsellors Matt and Sandra explore Huntington disease, prenatal and lab-based testing ethics, and how lab genetic counsellors act as gatekeepers. They discuss exclusion testing, the challenges of writing clear lab reports, and recent advances in gene therapy. The episode also covers the...
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From Mistake to Mastery: A Genetic Counsellor’s Story. Demystifying Genetics with Rachel Vanneste (Favourite gene SHH)
Host Matt Burgess talks with Canadian genetic counsellor Rachel Vanneste about lessons learned from early-career mistakes, the unexpected charm of the sonic hedgehog gene (SHH), and how sales and business skills are shaping modern genetic counselling. They discuss counselling in a second…
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Telehealth, Mainstreaming & the Modern Counsellor. Demystifying Genetics with Dawn Allain. (Favourite gene - GNAS)
Host Matt Burgess speaks with Dawn Allain, a genetic counsellor and leader at Ohio State University, about how genetic counselling has evolved. They discuss telehealth, mainstreaming of genetic testing, and how education and competency-based training must adapt for today’s genomic era. The…
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Reinventing Clinical Trials: How Sano Genetics Puts Patients First
Host Matt speaks with Dr. Patrick Short, scientist and CEO of Sano Genetics, about building a patient-centered genomics company, the challenges of designing and recruiting for clinical trials, and the evolving role of diagnostics in precision medicine. They discuss Short’s research into…
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Hidden Codes: Hereditary Melanoma, CDKN2A and the Families Behind the Genes
Dr. Aideen McInerney-Leo explores hereditary melanoma (CDKN2A), diagnostic disclosure in Turner syndrome, mainstreaming genomics, gene therapy, and the expanding role of genetic counsellors in research and patient care. Through clinical stories, family perspectives and practical takeaways on...
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Who Is a Genetic Counsellor? Redefining Identity in Genomics
Host Matt chats with American genetic counsellor Dr Lisa Schwartz about the evolving professional identity of genetic counsellors, the role of networking and qualitative research (including authors' positionality), and how clinical training translates into lab, policy and education roles. They…
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Jewish Ancestry & Genetics: Carrier Screening, Community and Choice
Host Matt Burgess interviews Gidon Schwartz from Jnetics, a UK charity offering pre-conception carrier screening and partnering with the NHS to increase access to BRCA and carrier testing for people with Jewish ancestry. They discuss why ancestry matters for certain recessive conditions, how...
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From Clinic to TikTok: Dena DNA’s Journey Demystifying Genetics
Host Matt Burgess interviews genetic counsellor and content creator Dena Goldberg (Dena DNA) about her path from clinical genetics to social media, her work educating the public on Lynch syndrome and cancer genetics, and how storytelling makes complex science accessible. The episode also covers...
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Living with CMT: Finding Answers in the SORD Gene
In this episode Matt Burgess interviews Darryl Beitsch about his lifelong experience with Charcot‑Marie‑Tooth (CMT) and the late discovery that his neuropathy is caused by mutations in the SORD gene. They discuss diagnosis, nerve testing, genetic testing advances, family implications…
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‘Powerhouse’ Lives: A Genetic Counselor’s Journey Through Mitochondrial Disease (GUK1)
Genetic counsellor Matt talks with Devin Shuman, a fellow genetic counsellor and rare-disease patient, about her family’s diagnosis of mitochondrial DNA depletion syndrome, the long diagnostic odyssey from muscle biopsy to a candidate gene discovery, and the realities of genetic testing. Devin...
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Unraveling Charcot-Marie-Tooth (CMT): A Journey Through Generations. Demystifying Genetics and CMT1A with Peter Critchley
Welcome to another enlightening episode of Demystifying Genetics, hosted by Matt Burgess. In this episode, we dive deep into the world of Charcot-Marie-Tooth disease (CMT) with Dr. Peter Critchley, who himself is affected by this genetic condition. The conversation uncovers the nuances of CMT,...
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Genetic Ventures: From Counseling to Entrepreneurship. Demystifying genetics with Erica Ramos (Favourite gene - HFE Hereditary Hemochromatosis)
Join host Matt as he engages in a captivating conversation with his guest, American genetic counselor Erica Ramos. In this episode of Demystifying Genetics, Erica shares insights into her favorite gene, the HFE gene, associated with hereditary hemochromatosis. Their discussion delves into the...
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From Rural Roots to Genetic Advocate. Demystifying Genetics with Kate Wilson.
In the season finale of Demystifying Genetics, host Matt is joined by fellow genetic counselor and podcaster, Kate Wilson, the voice behind All Access DNA. They delve into the evolving landscape of genetic counseling, exploring Kate's personal journey from rural beginnings to becoming a…
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Inside Genetic Counselling: Navigating Direct-to-Consumer Testing and Research. Demystifying Genetics with Joshua Nolan
In this episode of "Demystifying Genetics," host Matt Burgess speaks with English research genetic counsellor Joshua Nolan. They explore topics such as the underrepresentation of males in genetic counselling, the intricacies of direct-to-consumer genetic testing, and the symbiosis between…
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Pioneering Genetics in Ghana: A Groundbreaking Journey. Demystifying Genetics with Ahmed-Sherrif Kanvela Yussif
This episode of the "Demystifying Genetics" podcast features an insightful conversation with Ahmed-Sherrif Kanvela Yussif, one of the first genetic counsellors in Ghana. Host Matt Burgess delves into Ahmed's pioneering journey, exploring the role of genetic counseling in Ghana's healthcare system...
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Genetic Counseling Unwrapped: A Deep Dive. Demystifying Genetics with Jaime Jessen-Brown
Join host Matt, a seasoned genetic counselor, as he delves into the evolving world of clinical genetics in the latest episode of Demystifying Genetics. With guest Jaime Jessen-Brown, a genetic counselor based in Toronto, Canada, this podcast episode explores their shared journey from studying in...
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Unraveling Polygenic Risk Scores (PRS) in Genetics. Demystifying Genetics with Kylie Morgan
Join Matt Burgess in this episode of Demystifying Genetics as he sits down with Dr. Kylie Morgan, a genetic counsellor from Melbourne, to explore the emerging field of polygenic risk scores. Discover how this new form of genetic testing is shaping clinical practices in both Australia and the…
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How Genetic Counseling Is Evolving Beyond Hospital Walls. Demystifying Genetics with Lauren Giannetti Sferrazza
Lauren Giannetti-Sferrazza, a genetic counselor from New Jersey, shares her journey transitioning from clinical practice to industry and discusses the evolution of genetic counseling roles. Throughout the conversation, she offers insights into balancing professional responsibilities and personal...
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Beyond Genes: Can We Truly Measure the Impact of Genetic Counselling? Demystifying Genetics with Marion McAllister
Professor Marion McAllister shares the fascinating journey of developing the Genetic Counselling Outcome Scale, a groundbreaking tool that measures patient empowerment rather than just anxiety reduction. We explore how this simple questionnaire transformed genetic counselling assessment worldwide...
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What Happens When You Become Your Own Boss in Genetic Counseling? Demystifying Genetics with Scott Weissman.
Scott Weissman shares his journey of building a telehealth genetic counseling private practice, discussing the challenges of insurance contracts, licensing across states, and adapting to technological changes in cancer genetics. • Opened private practice in 2016 as a side business, now seeing…
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Resilience After Redundancy: A Genetic Counsellor’s Journey; Demystifying Genetics with Angela Arnold Ross
Matt sits down with Angela Arnold-Ross, an Australian genetic counsellor living in New Jersey, for a candid and heartfelt conversation about professional resilience and personal growth in the field of genetic counselling. • Sharing the experience of being laid off after 15 years and the emotional...
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Inherited Hearts and Healing Minds: A Cardiac GC’s Journey. Demystifying Genetics with Laura Yeates
Dr. Laura Yeates shares her journey as a cardiac genetic counsellor specialising in inherited heart diseases and supporting families affected by sudden cardiac death. We explore her recent PhD research on developing support interventions for these families and discuss the importance of wellbeing...
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From Diagnosis to Advocacy: Sarah Powell on Inherited Cancer and BRCA1. Demystifying Genetics with Sarah Powell
Sarah Powell, CEO of Inherited Cancers Australia, shares her journey from triple-negative breast cancer diagnosis at age 29 to discovering her BRCA1 mutation and becoming a powerful advocate for others facing inherited cancer risk. • Diagnosed with breast cancer at 29 with no family history…
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Beyond BRCA: Bringing Polygenic Risk into Primary Care. Demystifying Genetics with Sibel Saya
Dr. Matt Burgess interviews genetic counsellor and researcher Dr. Sibel Saya about integrating genetic testing into primary healthcare settings, focusing on polygenic risk scores as a tool for personalizing cancer screening. • Genetic counselling principles applied in primary care settings rather...
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Decoding Risk: Understanding Polygenic Risk Scores in Modern Medicine. Demystifying Genetics with Erica Spaeth
This episode dives into polygenic risk testing, exploring how genetic data can inform healthcare strategies. We discuss the complexities of communicating risk, the role of polygenic scores in identifying disease susceptibility, and the evolving landscape of personalized medicine. • Introduction…
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Beyond the Science: The Emotional Work of Genetic Counselling. Demystifying Genetics with Gillian Hooker
Join us for an insightful discussion that delves into the intricacies of genetic counseling through the lens of our guest, Dr. Gillian Hooker. We explore the domain's challenges, the importance of community, and the transformative power of empathy. • Introduction of Dr. Gillian Hooker and her…
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Living in the Shadow of Huntington Disease & the HTT gene. Demystifying Genetics with Kathy Langley
Kathy Langley opens up about her family's struggles with Huntington disease, sharing her personal journey from the silent pain of knowing her father's condition to advocating for awareness and support in the community. She highlights the emotional complexities surrounding genetic testing…
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Podcasting, Patients, and the Power of Story in Genetics. Demystifying Genetics with Kira Dineen
Kira Dineen shares her transformative journey from a curious teenager to an award-winning genetic counselor and podcaster. The conversation explores the nuances of genetic counseling, the impact of technology like CRISPR, and the unexpected connections that shape careers in genetics. • Kira...
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MTHFR and Misunderstandings: Counselling Through Confusion. Demystifying Genetics with Sarah Long
This episode features a conversation with genetic counsellor Sarah Long, who shares her insights into non-invasive prenatal testing (NIPT) and its implications for expectant parents. We discuss the importance of positive predictive values, variations of unknown significance, and the ethical...
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ClinVar, Controversy, and the Case for Change at Myriad Genetics. Demystifying Genetics with Susan Manley
Myriad Genetics has had a contentious reputation, especially amongst the genetic counseling community in North America. This is mainly due to Myriad's involvement in the patenting of the BRCA genes in the USA and Myriad's decision to not submit data to ClinVar unlike most other genetic testing...
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Pedigrees, Pronouns, and Progress: Shaping Inclusive Genetics Tools with TrakGene. Demystifying Genetics with Kathryn van Diemen
We're thrilled to welcome Kathryn van Diemen, a data aficionado turned genetic counsellor, who shares her captivating journey and current role at TrackGene. From discovering her love for data and genetics to exploring rugby fields and engaging in playful tussles with her Cockerspaniel, Pepper,...
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More Than a Degree: Creating Space for Growth in Genetic Counselling Education. Demystifying Genetics with Alison McEwen
Experience the gratifying journey of Dr. Alison McEwen, a pioneer in genetic counseling, and the current president of the Human Genetics Society of Australasia. Embark with us as we traverse Alison's path of setting up the UTS Genetic Counseling course, her innovative philosophy of creating…
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At the Crossroads of Discovery: Genetics, Ethics, and the Story of Chopra-Amiel-Gordon syndrome (ANKRD17 gene).Demystifying Genetics with Maya Chopra
In an engaging exploration of genetics, join me as I converse with the distinguished Dr. Maya Chopra of Harvard Medical School and Boston Children's Hospital. We delve into her captivating journey of researching rare and complex disorders, providing an intriguing insight into the intersection of...
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Where Law Meets the Genome: Genetic Counselling, Human Rights, and Public Health Ethics. Demystifying Genetics with Julia Mansour
Prepare to be immersed in the intriguing world of genetic counseling as we navigate its intersection with law, policy, and public health, with our esteemed guest, Julia Mansour. This episode promises to expand your horizons, offering insights into Julia’s career transition from law to genetic...
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From Chromosomes to Chapters: The Journey of a Genetic Educator. Demystifying Genetics with Janice Berliner
Get set for an enlightening journey into genetics and writing with the remarkable Janice Berliner. Our conversation traverses her career evolution from being a genetic counselor to steering the helm as a program director, revealing her fears, inspirations, and her passion for nurturing the next...
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Alfie, Academia, and the Art of Genetic Counseling Research. Demystifying Genetics with Laura Forrest
Explore the captivating world of genetic counseling with Laura Forrest, a respected academic and associate genetic counsellor all the way from Melbourne, Australia. Together, we untangle the intricacies of qualitative research in clinical genetics and the fascinating journey through her PhD in...
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Demystifying Genetics with Pilar Magoulas
In this second episode of season 2 of Demystifying Genetics I chat with Chief Genetic Counselor Pilar Magoulas from Texas, USA. This is my first episode in this series where I chat with an American genetic counselor. https://www.texaschildrens.org/find-a-provider/pilar-magoulas-ms-cgc Support the...
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Demystifying Genetics with Elly Lynch
Hello! I've returned with my podcast Demystifying Genetics. In this return pod I talk to senior genetic counsellor Elly Lynch. Elly and I discuss genetic counselling in the current climate in Melbourne, Australia. https://www.linkedin.com/in/elly-lynch-9089192a/?originalSubdomain=au Support the...
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Demystifying Genetics for Hereditary Breast and Ovarian Cancer Week
This week is Hereditary Breast and Ovarian Cancer Awareness and I was lucky enough to have three fabulous guests on Demystifying Genetics. First Guest – Ellen Matlof, Genetic Counselor & Director, My Gene Counsel Ellen is a genetic counsellor extraordinaire in Connecticut, USA, with many years...
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Demystifying Genetics with Mike Field
In this ninth Demystifying Genetics podcast I discuss Fragile X and other conditions of learning disability with Dr Mike Field, Consultant Clinical Geneticist. Mike has a lovely way of taking complex concepts and issues and explaining in a way that is easy and straightforward to understand. Mike...
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Demystifying Genetics with John Conaghan
Welcome to a podcast all about Huntington disease (HD). Joining me in this podcast is Senior Social Worker John Conaghan. I love all my guests and love all of my conversations about demystifying genetics, however this podcast feels special. John is such a caring and empathic worker and his…
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Demystifying Genetics with Martin Delatycki
Prof Martin Delatycki joins me for this podcast. Martin is a clinical geneticist in Melbourne, Australia. He works clinically, but also has a strong research interest. We speak about the following genetic conditions: • Friedreich’s ataxia • Hereditary Haemochromatosis • Tay Sachs disease • Spinal...
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ABOUT THIS SHOW
This is a podcast series called Demystifying Genetics where I, Dr Matt Burgess, Genetic Counsellor interview other genetic counsellors, people working in genetics or people affected by genetic conditions. We chat about human clinical genetics, genetic counselling, ethics, pyschosocial issues and more. To contact me, please reach out at matt at insightgenomica dot au.
HOSTED BY
Matt Burgess
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