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 passionate advocate for equitable access to clinical genetics. This episode highlights the disparities within healthcare systems, the importance of accessible genetic information, and how Kate is breaking norms w...
Jun 02, 2025•53 min•Season 4Ep. 17
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 clinical and research work in genetics. Joshua shares his insights into the professional challenges and personal experiences that shape his approach to genetic counseling. They also discuss the importance of em...
May 26, 2025•54 min•Season 4Ep. 16
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 and its impact on public health, particularly regarding sickle cell disease. Ahmed shares his inspiring transition from teaching to genetic counseling and discusses the cultural and religious dynamics i...
May 20, 2025•41 min•Season 4Ep. 15
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 Newcastle, Australia, to Jaime's diverse career path. Jaime shares insights from her experience transitioning from a prenatal clinic to a Medical Science Liaison role, discussing the challenges and advan...
May 12, 2025•53 min•Season 4Ep. 14
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 United States. Learn about the personal experiences of genetic counsellors, Matt and Kylie, as they discuss the intricacies of genetic testing and the evolving landscape of genetic counseling. They share ane...
May 05, 2025•46 min•Season 4Ep. 13
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 experience as a pregnant genetic counselor preparing for childbirth. • Clinical burnout as a catalyst for moving to industry positions • Shifting perceptions of industry roles from "the dark side" to val...
Apr 21, 2025•1 hr 1 min•Season 4Ep. 12
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 and evolved to meet changing healthcare needs. • Creating the first standardised measure for genetic counselling outcomes based on patient-reported benefits • Translating the scale across cultures and n...
Apr 14, 2025•44 min•Season 4Ep. 11
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 15-20 patients weekly • Despite having licenses in 25-26 states, establishing insurance contracts remains a major obstacle • Pivoted to 100% telehealth during the pandemic, offering after-hours and weekend ...
Apr 08, 2025•48 min•Season 4Ep. 10
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 impact of unexpected job loss • The stages of grief following a career disruption and how writing became therapeutic • Using networking to rebuild a career path through connections with other genetic co...
Apr 01, 2025•55 min•Season 4Ep. 9
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 for genetic counselling professionals. • Cardiac genetic counselling focuses on inherited cardiomyopathies and arrhythmias • Dr. Yeates completed her PhD during COVID, developing support interventions fo...
Mar 24, 2025•58 min•Season 4Ep. 8
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, Sarah later discovered she carries a BRCA1 mutation connected to her Ashkenazi Jewish ancestry • After treatment, Sarah became involved with Pink Hope (now Inherited Cancers Australia) to find peer support f...
Mar 17, 2025•51 min•Season 4Ep. 7
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 than just specialist clinics • Polygenic risk scores differ from traditional genetic tests by analyzing hundreds of common variants with small individual effects • Australia and New Zealand have the hig...
Mar 10, 2025•44 min•Season 4Ep. 6
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 to polygenic risk testing and its significance • Insights from Dr. Erica Spaeth on cancer biology and GeneType • Engaging analogies to explain complex genetic concepts • The challenges clinicians face whe...
Mar 05, 2025•50 min•Season 4Ep. 5
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 role in genetic counseling • The impact of the COVID-19 pandemic on the genetic counseling profession • Personal stories of resilience and post-traumatic growth • The evolution of training programs in genet...
Feb 25, 2025•46 min•Season 4Ep. 4
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 decisions and the need for improved education on HD within the healthcare sector. • Kathy’s early experiences with her father's HD symptoms • The emotional impact of discussing HD in the family • The dilemma of ...
Feb 18, 2025•37 min•Season 4Ep. 3
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 discusses her personal journey into genetic counseling • Emphasises the balance between technical skills and patient care • Addresses common misconceptions about the emotional weight of the profession • Share...
Feb 10, 2025•48 min•Season 4Ep. 2
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 dilemmas faced by families navigating genetic testing. • Exploring the evolution and methodologies of NIPT • Clarifying the concept of positive predictive value in genetic testing • Highlighting the crucial r...
Feb 03, 2025•37 min•Season 4Ep. 1
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 laboratories. Myriad Genetics has a suite of fantastic, industry leading genetic tests, that help thousands of people each month. However, a lab is more than it's tests. Cultural change may be needed, but ...
Oct 18, 2023•38 min•Season 3Ep. 7
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, Kathryn lets us in on the world behind the white coat! Tune in as we discuss the seismic shifts in genetic counselling education, with much more comprehensive courses now available compared to our and Kath...
Sep 27, 2023•34 min•Season 3Ep. 6
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 'brave spaces' that inspire students to push their boundaries, and her dedication towards a client-centered approach in healthcare. Dr. McEwen also takes us through her riveting PhD journey focused on familia...
Sep 06, 2023•39 min•Season 3Ep. 5
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 research and clinical practice. We also explore the crucial role of clinical geneticists in the fast-paced world of gene therapy. The middle segment of our conversation takes an ethical bend as we dissec...
Aug 22, 2023•40 min•Season 3Ep. 4
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 counseling, her stance on the controversial position statement from the Human Genetic Society of Australasia, and her unique experiences living in Tasmania. Our conversation doesn't stop there! Ever wondere...
Aug 08, 2023•35 min•Season 3Ep. 3
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 generation in the field. She's also candid about her plunge into academia and the transformative landscape of genetic testing technology she's witnessed over her career. The second half of our chat takes ...
Jul 16, 2023•39 min•Season 3Ep. 2
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 familial communications. We also delve deep into her publications and discuss the promising Genetic Counseling Outcome Scale. Along the way, enjoy lighter moments as Laura shares the story of her new puppy...
Jul 06, 2023•38 min•Season 3Ep. 1
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 show Demystifying Genetics is sponsored by TrakGene https://www.trakgene.com/...
Aug 27, 2020•49 min•Season 2Ep. 2
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 show Demystifying Genetics is sponsored by TrakGene https://www.trakgene.com/...
Aug 13, 2020•41 min•Season 2Ep. 1
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 experience working in the familial cancer setting. We discuss: • The role of the Genetic Counselor and their role in the ordering and interpretation of genetic results • What a gene is and what variant...
Oct 02, 2018•1 hr 17 min•Season 1Ep. 10
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 has been involved with many research projects to do with the genetics of learning disability and we spent some time talking about this. We also covered In vitro Fertilisation (IVF) and preimplantation ge...
Sep 19, 2018•40 min•Season 1Ep. 9
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 kindness shines through in this conversation. We discuss what Huntington disease is and how it affects people with the condition and also the affect it has on their families. John has a long history of working...
Aug 30, 2018•54 min•Season 1Ep. 8
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 Muscular atrophy • Spinocerebellar ataxia type 3 More information about these conditions can be found at rarediseases.org We also talk about the genetic research and clinical trials that Martin is invol...
Jul 29, 2018•32 min•Season 1Ep. 7
