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DNA Dialogues: Conversations in Genetic Counseling Research

DNA Dialogues: Conversations in Genetic Counseling Research

By: Journal of Genetic Counseling (Jehannine Austin Naomi Wagner Khalida Liaquat Kate Wilson and DNA Today’s Kira Dineen)
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Summary
 In DNA Dialogues we dive into the intricate world of genetic counseling research. Join us as we peel back the layers of groundbreaking articles from the Journal of Genetic Counseling, bringing you exclusive discussions with the authors themselves. Each episode sparks a vibrant exchange, exploring the latest discoveries, ethical dilemmas, and technological advances that are shaping the future of medical genetics. From navigating complex testing decisions to building trust with diverse communities, listen in as we unpack the science, challenge assumptions, and celebrate the human connection at the heart of genetic counseling research. So, grab your headphones, unravel the double helix, and prepare to be captivated by the array of voices in DNA Dialogues, a podcast where the blueprint of life meets intimate human conversation.Copyright 2026 All Rights Reserved Biological Sciences Science
Episodes
  • Bonus: Recommended Updates to the Huntington's Disease Testing Protocol

    Bonus: Recommended Updates to the Huntington's Disease Testing Protocol
    Nov 6 2026
    In this bonus episode, we delve into the evolution of the Huntington Disease Predictive Genetic Testing Protocol, exploring its origins and the pressing need for updates after a decade. Publication: 40+ years of the Huntington disease predictive genetic testing protocol: Recommendations for an update Jill Goldman is a Professor of Genetic Counseling in Neurology at Columbia University Medical Center. She has specialized in hereditary neurological diseases such as FTD, Prion disease, Alzheimer’s disease, Parkinson’s disease, and Huntington’s disease. She is on the faculty of the Columbia University Master’s Program in Genetic Counseling. Additionally, she leads a support group for caregivers of people with frontotemporal dementia., She also created and coordinates “A Friend for Rachel”, a companionship program in which people with early to moderate dementia are paired with Columbia pre-medical students. Ms. Goldman has authored many papers and book chapters including: “Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors” (Genet Med. 2011). She is the editor of the textbook: Genetic Counseling for Adult Neurogenetic Disease: A Casebook for Clinicians, Springer, 2015. Ms. Goldman is an emeritus member of the medical advisory council of the Association for Frontotemporal Dementia (AFTD), Advisory Panel and a Board of Directors member of the AFTD and Chair of the Columbia University Genetic Counseling Master’s Program Advisory Board. Wendy R. Uhlmann, MS, LCGC, is the director/senior genetic counselor of the Medical Genetics Clinic (adults) at Michigan Medicine/University of Michigan and provides genetic counseling, primarily to patients with neurogenetic conditions (e.g. ALS, Alzheimer's disease/dementias, Huntington disease). She is a Clinical Professor in the Departments of Internal Medicine and Human Genetics and notably was the first faculty member to achieve this rank in the medical school with a master’s degree. She is an executive faculty member of the master's degree Genetic Counseling Program and member of the Adult Ethics Committee. Wendy Uhlmann is a Past President of the National Society of Genetic Counselors (NSGC) and previously served on the Board of Directors of the American Society of Human Genetics, the Genetic Alliance Board and as NSGC’s liaison to the National Advisory Council for Human Genome Research. Currently she serves on the Advisory Board for the Center for ELSI Resources and Analysis (CERA) and the Scientific Advisory Board for the Michigan Biotrust and previously served on the ELSI Congress Organizing Committee. Wendy Uhlmann co-edited the first two editions of the book “A Guide to Genetic Counseling,” which is used internationally in genetic counseling graduate programs. Wendy Uhlmann was the recipient of NSGC’s Regional Leadership Award (1996), the Outstanding Volunteer Award (2009), the Natalie Weissberger Paul Lifetime Achievement Award (2011) and University of Michigan’s Basic Sciences Teaching Award in Human Genetics (2013). In this episode we discuss: - The inception of the predictive genetic testing protocol in Huntington’s disease - Need for revisions and updates to the protocol - Evolving roles of genetic counselors - Innovations in patient interaction - The human element in genetic counseling Additional resources: - 2013 publication: Recommendations for the predictive genetic test in Huntington’s disease by MacLeod, Tibben, Frontali et al. - 2016 Genetic Testing Protocol for Huntington’s Disease from the Huntington’s Disease Society of America Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors. Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”. For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others. Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com. DNA Dialogues’ team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today’s Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Vanaja Chavva.
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    52 mins
  • #33- Huntington’s Disease: Stigma, Genetic Risk and Family Decisions

    #33- Huntington’s Disease: Stigma, Genetic Risk and Family Decisions
    Oct 29 2026
    This episode focuses on published articles related to Huntington’s disease (HD). In the first segment we discuss how stigma is defined, experienced, and measured in HD research by talking to two researchers who discuss findings from a scoping review examining three decades of literature. For the second segment, we interview two researchers about their study on how individuals and families navigate genetic testing and reproductive decisions when HD runs in the family. Segment 1: Exploring stigma in Huntington's disease: A scoping review of methods and conceptualizations for understanding experiences of gene expansion carriers and at-risk individuals Dr Sarah Gunn is a clinical psychologist and researcher in clinical psychology at the University of Leicester, UK. She is also a member of a family affected by Huntington's disease (HD). Her primary research area is in understanding and formulating the psychological impacts of HD, and developing interventions to improve mental wellbeing among HD families (including people with the gene expansion, their caregivers and wider family members). Sarah is the author of "Coping with Huntington's", a book which combines guidance on mental health strategies and discussion of her personal lived experience of HD, and she currently holds a Wellcome award for an eight-year programme of research into mental health in HD families. Sarah can be found on Instagram @HDinMind. Jane Simpson is Professor of the Psychology of Neurodegenerative Conditions at Lancaster University. As both an academic and clinical psychologist she has been working to improve our understandings of the lives of people affected by conditions such as Huntington’s for over 20 years and has over 160 peer-reviewed publications. She is particularly keen to develop effective interventions to improve mental health, and practitioners’ understandings of mental health. Jane is co-lead of the Psychological Approaches and Interventions working group of the European Huntington’s Disease Network: Psychological Interventions and Approaches WG – European Huntington's Disease Network In this segment we discuss: - Understanding stigma through theoretical frameworks - The lack of a formal theoretical definition of stigma in HD research - Who is represented in the research on stigma in HD - The future of HD stigma research Segment 2: The Recommendation Paradox: Perspectives on Genetic Testing in Huntington's Disease Families Dr. Noit Inbar Parkinson's & Huntington's Disease clinician and researcher Movement Disorders Unit, Tel Aviv Sourasky Medical Center; Physical Therapy Department, Stanley Steyer School of Health Sciences, Tel Aviv University Nurit Omer, MD Deputy Director, Neurology Department Director, HD and CJD Clinic Cognitive Neurology Unit Movement Disorders Unit Neurological Institute Tel-Aviv Medical Center (Ichilov) Tel-Aviv University Tel-Aviv, Israel In this segment we discuss: - What the study team learned about how individuals and families come to understand their risk - The difficult choices faced by people at risk for HD - How experiences differ among people with HD, at-risk relatives, and spouses or partners - Why people may approach genetic testing for themselves differently from reproductive decisions intended to prevent HD transmission to their children. Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors. Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”. For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others. Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com. DNA Dialogues’ team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today’s Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Vanaja Chavva.
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    1 hr
  • #32- Exploring new approaches to service delivery: video tools and consumer experiences

    #32- Exploring new approaches to service delivery: video tools and consumer experiences
    Oct 1 2026
    This episode explores genetic service delivery and various ways genetic counseling can be incorporated. Segment 1: How to Reduce Time to Genetic Testing: A Video-Based Approach in the Inherited Cardiac Conditions Service Guest Bios Dr Lisa Bryson is a Clinical Genetics Registrar at the Centre for Genomic Medicine in Glasgow, with a background in paediatrics. She is due to complete her clinical genetics training shortly and will take up a Consultant Clinical Geneticist post in New Zealand. She has been involved in a number of research projects alongside her clinical training, including the GenVid pilot study and as an Associate Principal Investigator for the GENROC study. Her research interests include rare disease and the clinical application of genomic medicine. Dr Ruth McGowan is a Consultant in Clinical Genetics (West of Scotland, Centre for Genomic Medicine), Honorary Clinical Associate Professor (University of Glasgow) and member of the Developmental Endocrinology Research Group (DERG), affiliated to University of Glasgow. Her key interests are Inherited Cardiac Conditions, Rare Conditions and Disorders of Sex Development. She is an active member of the Network for Inherited Cardiac Conditions Scotland (NICCS) and was previously Co-chair of the Scottish Rare Disease Implementation Board. Dr Ruth McGowan is the Lead Clinical Geneticist for the West of Scotland Inherited Cardiac Conditions service. She has been Chief or Principal Investigator of numerous research projects including the MRC/CSO funded ‘Scottish Genomes Partnership’, the ‘Scottish Participation in the 100K Genomes Knowledgebase’ and the ‘Genetic Investigation of Rare Disorders’ study. In this segment we discuss: - Use of a video-based genetic counseling pathway in the UK NHS for patients at risk of an inherited cardiac conditions - The impact of GenVid pathway on barriers to genetic services - Integration of genetic counseling and digital tools Segment 2: Consumer Experiences and Perceptions of Genetic Counseling in Provider-Mediated Genetic Testing Guest Bios: Madison Kilbride, PhD, is an Assistant Professor of Philosophy at the University of Utah. She received her doctorate from Princeton University and was a fellow in the Postdoctoral Training Program in the Ethical, Legal and Social Implications (ELSI) of Genetics and Genomics at the University of Pennsylvania. Her scholarship examines ethical issues surrounding genetic testing, particularly those raised by consumer genetic testing. Katie Lauro, MS, LCGC is a general genetics and cancer genetic counselor at Genome Medical, a telehealth genetic counseling service. She received her BS in Human Biology from Michigan State University and her MS in Genetic Counseling from the University of Utah Graduate Program in Genetic Counseling (UUGPGC). Katie is grateful for the opportunity to share and discuss her research during her time in the UUGPGC, which was published in the Journal of Genetic Counseling in July 2026. In this segment we discuss: - Provider-mediated genetic testing and its distinction from traditional DTC testing. - The ENLITE study and its focus on consumer experiences with genetic testing - Consumer perceptions of genetic counseling and barriers to access - Future directions for integrating genetic counseling into broader healthcare settings Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors. Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”. For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others. Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com. DNA Dialogues’ team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today’s Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Vanaja Chavva.
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    57 mins
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