DNA Dialogues: Conversations in Genetic Counseling Research

In this episode, we are exploring innovative research methodologies in genetics, including narrative and visual methods, conversation analysis and body mapping. Our guests highlight using these methods to drive inclusive and diverse research as well as providing a more nuanced understanding of the lived experiences of families. 
 

Segment 1: Defining joy after a genetic diagnosis: A narrative inquiry

 

Guest Bio:

UNC Greensboro Genetic Counseling Program graduate Jordan Miller earned a masters degree in genetic counseling in 2025 and currently works as a prenatal and cancer genetic counselor at Prisma Health in Columbia, South Carolina. In addition to clinical practice, Jordan serves as part of the faculty for the University of South Carolina Genetic Counseling program, where she is passionate about supporting and mentoring future genetic counselors.

 

Following a personal experience of finding joy after a devastating family diagnosis, Jordan developed a deep passion for exploring how joy, hope, and humanity can remain central to patient care. Her work and advocacy focus on fostering meaningful conversations about compassionate care and the ways healthcare professionals can help patients and families find moments of connection and resilience during difficult experiences.

 

In this segment we discuss:

- The use of qualitative narrative inquiry and in-person observations, rather than standard surveys, to capture the visceral, underreported experience of joy following a family genetic diagnosis.

- The "FERN" grounded framework (Focusing on the present, Embracing life, Redefining joy, and Normalizing the journey) and how its core themes emerged from family narratives.

- How healthcare providers and communities can foster joy and humanize care by interacting with pediatric patients as individuals rather than focusing solely on their diagnosis.

- Balancing grief and joy in healthcare conversations without pushing toxic positivity, highlighting how small daily moments of joy help families hold onto hope.

 

Segment 2: Expanding the methodological repertoire: Integrating multimodal approaches in genetic counseling research

 

Guest Bios:

Ms Malebo Malope is a clinical genetic counsellor and currently employed at Stellenbosch University as a lecturer. She coordinates the teaching activities for the Clinical Genetics and Genetic Counselling Unit and leads short courses within the unit. Additionally, Malebo provides clinical genetic counselling at Tygerberg Hospital and participates in clinical training. 

Ms Malope has a special interest in decision-making on termination of pregnancy for foetal abnormalities, accessible genetic counselling services and diversity and inclusion within the field of genetics and genomics.

 

Dr Megan Scott is a South African clinical genetic counsellor and health communication

researcher based in Johannesburg. She holds a PhD in Health Communication and works in independent clinical practice, supporting individuals and families across a wide range of genetic indications, including prenatal, paediatric, oncology, ophthalmology and psychiatric genetics. She is actively involved in the South African medical genetics community, including student supervision and training and has previously served on the Genetic Counsellors South Africa (GCSA) committee.

Dr Scott is also a Research Associate at the Health Communication Research Unit (HCRU) at the University of the Witwatersrand. Her research focuses on improving healthcare practice across interdisciplinary fields, qualitative research methods, risk and uncertainty discussions, family communication and patient-centred care. She has presented at local and international conferences, published in the fields of genetic counselling and health communication and regularly reviews for academic journals. She also serves as a supervisor, reviewer and examiner for postgraduate students in genetic counselling, public health, psychology and clinical medicine.

 

Dr Lorraine Cowley is a clinical academic with a background in oncology nursing and

currently serves as Principal Genetic Counsellor at the Northern Genetics Service,

Newcastle upon Tyne Hospitals NHS Foundation Trust. She is also an Honorary Senior

Lecturer at Newcastle University. With over 25 years of experience in patient perspectives research, Lorraine has led, co-led, supervised and contributed to numerous national and international studies, with a particular focus on improving patient-centred approaches in genetic and rare disease services.

She is currently funded by the Medical Research Council (MRC) and the National Institute

for Health and Social Care Research (NIHR) through a Clinical Academic Research

Partnership (CARP) Fellowship. Her current work involves collaboration across Latin

America and the UK to evaluate the delivery and impact of whole exome sequencing for

individuals with rare muscle disorders, aiming to improve equitable access to genomic

diagnostics in rare disease care.

 

In this segment we discuss:

- How visual methods like photographic elicitation and social mapping challenge traditional biological pedigrees, revealing diverse family dynamics, gendered support roles, and moral tensions around genetic testing.

- The therapeutic and harm-reduction benefits of body mapping in complex pregnancy cases, allowing patients to express embodied emotional experiences beyond verbal language.

- Applying conversation analysis to real-time clinical consultations to observe non-verbal cues and explore the complex tension between counselor neutrality and institutional expectations.

- The potential of multimodal methodologies to capture culturally specific kinship structures globally and their application as reflective tools in genetic counseling supervision and training.

 

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 Chaava.

In this episode of DNA Dialogues, we explore two innovative approaches to improving access to genetic testing and hereditary cancer care. First, Daniella Kamara and Mariana Niell Swiller discuss UCLA's GENETECA™ program, a point-of-care genetic testing model that integrates cancer genetic services directly into oncology clinics. In the second half of the episode, Tesla Theoryn discusses research examining why many people who express interest in genetic testing never complete the process. The conversation explores how life circumstances, privacy and insurance concerns, changing readiness, and healthcare system barriers influence decision-making over time.
 
Segment 1: From the ground up: Launching GENETECA™ (GENetic education and TEsting for CAncer) a point-of-care cancer genetics service at an academic medical center

 
Guest Bios:

Daniella Kamara, MS, LCGC is a cancer genetic counselor at University of California, Los Angeles (UCLA). She has been a cancer genetic counselor for over 10 years and works both in the clinical and research settings helping individuals and families who face a hereditary predisposition to cancer. She has contributed to various research studies over the years aiming to increase access to hereditary cancer testing, creating novel models for support for individuals and their family members, and exploring population-based testing models. She is passionate about supporting patients and their family members to feel empowered by their genetic test results and finding ways to make it easier to navigate healthcare for those facing a hereditary predisposition to cancer. 

 
Mariana Niell-Swiller, MS, CGC, is a board-certified genetic counselor with 20 years of

experience specializing in hereditary cancer risk assessment. She holds a BS in Biology

from Cornell University and an MS in Genetic Counseling from Brandeis University, and

began her clinical career after working as a molecular genetics laboratory technician in

neurogenetics. She has since held clinical and leadership roles across a range of

settings, from community hospitals to academic medical centers.

In her current role as Director of Cancer Genetics at UCLA Health, Mariana leads both

clinical program development and innovative IT infrastructure to expand access to

hereditary cancer services. She is driven by the belief that thoughtfully designed

systems can make genomic medicine more scalable, equitable, and sustainable — and

is committed to advancing that vision across health systems. Outside of work, she

enjoys kayaking, hiking, and dancing, and shares a love of nature with her husband and

son.

In this segment we discuss:

- Increased access to genetic testing for pancreatic cancer patients through a point-of-care model

- The benefits and challenges of mainstreaming genetic testing within routine oncology care

- How genetic counseling assistants help improve efficiency, scalability, and patient access to cancer genetics services

- Lessons learned from implementing GENETECA™ and balancing greater access with the personalized aspects of genetic counseling

 
Segment 2: Cancer genetic testing uptake in the primary care setting: Patient perspectives on barriers and facilitators throughout the testing process

 

Guest Bio:

Tesla Theoryn, M.Ed., is a qualitative researcher and former high school science teacher with an applied interest in science communication and decision-making in the context of genetic testing. Her work focuses on how medical messaging and timing influence patient engagement and healthcare decisions. She is currently completing her doctorate from the University of Washington in Public Health Genetics.

http://www.linkedin.com/in/theoryn

 
In this segment we discuss:

- How life circumstances influence uptake of genetic testing

- How re-offering genetic testing over time may change uptake as people's priorities, concerns, and readiness change

- The impact of privacy, insurance, and legal concerns on genetic testing decisions

- Strategies for expanding hereditary cancer screening in primary care while improving equity, accessibility, and patient-centered care

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.

 
DNA Dialogues has been recognized as a Top 3 California Genetics Podcast and a Top 25 Molecular Biology Podcast by FeedSpot! Check out the recognitions here: https://podcast.feedspot.com/california_genetics_podcasts/
https://podcast.feedspot.com/molecular_biology_podcasts/
 

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 Stephanie Schofield.

Learn the importance of community engagement in intersex research from Louis Canavan and Bria Brown-King. Discover insights into how intersex voices shape prenatal screening conversations. It's crucial that research reflects the realities and needs of those being studied. When intersex perspectives are included, the findings are not only richer but also more relevant to the community.

 

Featured Article: Intersex community perspectives on prenatal sex chromosome screening: “It silences intersex”

 

Guest Bios:

Louis is an MGH IHP Genetic Counseling alum and is currently studying to be a high school biology/genetics teacher.He works as a paraprofessional at a middle school and is passionate about advocating for the LGBTQIA+ and neurodivergent communities. 

www.linkedin.com/in/louiscanavan 

 

Bria is a Black, queer, non-binary, and intersex person. Bria started doing intersex advocacy work as an intern with interACT, where they published articles for them, the ACLU, and Teen Vogue. In 2019, they became the first openly intersex person to speak about intersex issues on the steps of the Supreme Court. Bria now serves on multiple advisory boards, representing intersex people both nationally and internationally. Bria earned their bachelor’s degree in Political Science from York College of Pennsylvania and their Master’s in Nonprofit Management and Philanthropy from Bay Path University. 

 

In this segment we discuss:

- How community-engaged research partnerships can improve studies involving intersex individuals and ensure lived experiences are represented.

- Intersex community perspectives on prenatal screening, including both potential benefits and concerns about how results may be used.

- The impact of healthcare provider language on patient experiences, reproductive decision-making, and perceptions of intersex traits.

- The importance of bodily autonomy, reducing stigma in healthcare, and improving provider education about intersex variations.

 

Resources:

InterACT: Advocates for Intersex Youth

Intersex Justice Project

National LGBTQIA+ Health Education Center

 

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 Stephanie Schofield.

In this episode, we discuss the complexities of predictive genetic testing in Amyotrophic Lateral Sclerosis (ALS) from Dr. Jade Howard's recent study. Learn how it impacts decision-making and what it means for families.

 

Article: “Predictive genetic testing in amyotrophic lateral sclerosis (ALS): Experiences of decision-making and engagement with UK genetic counseling services”

 

In this episode we discuss:

- The decision-making process surrounding predictive testing

- Navigating family dynamics and personal goals

- The uncertainty that comes with genetic risks

- The need for tailored communication and ongoing support after testing

 

Guest Bio:

Dr Jade Howard is a postdoctoral researcher at Sheffield Institute for Translational Neuroscience, University of Sheffield, UK. Her research focuses on genetic testing in motor neuron disease (MND/ALS), and the development of interventions to help families navigate decisions around testing and the disclosure of results.

 

Resources:

- This research is being led by PI Dr Alisdair McNeill, with the support of the study team Prof Hilary Bekker and Prof Chris McDermott, and a project steering committee. The team are grateful to The MND Association for funding this work and all the participants who took part.

- If you are interested in the decision aids discussed in this podcast, they can be found here: https://mymndgenetest.shef.ac.uk/

 

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 Stephanie Schofield.

In this episode we are exploring 2 recent Journal of Genetic Counseling articles on the topic of insurance coverage and concerns about genetic discrimination.
Segment 1: Cardiovascular genetic counselor decision making about discussing life insurance with patients

Guest Bios:

Sara Cherny has almost 20 years of experience as a genetic counselor in the Chicagoland area, specializing in cardiovascular genetics for the past decade. Her wide range of experience allows her to provide comprehensive care for patients in the Cardiovascular Genetics Clinic at Ann & Robert H. Lurie Children’s Hospital, where she engages in patient care, program development, and research. Her research focuses on trends in cardiovascular genetics, access to genetic services, genetic privacy, and genetic discrimination. She is involved in advocacy work with the Illinois Society of Genetic Professionals (ISGP) and the Pediatric and Congenital Electrophysiology Society (PACES). Sara loves how her work combines science and patient care, and is committed to scientific discovery that both improves patient experience and moves the field forward. 

Sarah Jurgensmeyer Langas is a genetic counselor in the Heart Center at the Ann and Robert H. Lurie Children’s Hospital of Chicago with a specific focus in congenital heart disease, aortopathies, and Williams syndrome. Sarah is an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine and enjoys teaching and providing clinical supervision to genetic counseling graduate students and medical students. Sarah is also active in the Illinois Society of Genetic Professionals, currently serving on the Advocacy Committee and previously serving as President in 2024. She was the recipient of the 2023 ACMG Foundation Carolyn Mills Lovell Genetic Counselor Award and is passionate about expansion of genetic services to more patient populations.

https://www.instagram.com/luriechildrensheartcenter/

https://www.instagram.com/sara_cherny/

 

In this segment we discuss:

- How life insurance considerations arise in genetic counseling, particularly in cardiovascular genetics, and how conversations vary based on patient knowledge, phenotype, and age.

- Findings that genetic counselors are more likely to address life insurance with phenotype-positive and adult patients, while time constraints and clinical context can limit these discussions.

- How fear of genetic discrimination impacts patient decision-making, including declining testing, alongside reports of real-world insurance denial.

- Challenges in balancing transparency with avoiding unnecessary fear, and the need for better education, standardized guidance, and further research in this space.

Segment 2: Understanding GINA through case examples: A guide for US-based genetic counselors

 

Guest Bios:

Anya Prince is the David H. Vernon Professor at the University of Iowa College of Law. Her research and teaching interests focus on genetic discrimination and privacy.

@anyaprince.bsky.social

 

Misha Rashkin, MS, CGC, graduated from the Icahn School of Medicine at Mount Sinai Masters program in genetic counseling in 2013. He is a clinical genetic counselor in oncology at Stanford HealthCare, focusing on hereditary malignant hematology. He chaired the NSGC public policy committee in 2018, and lectures about GINA and privacy to genetic counseling graduate programs.

 

In this segment we discuss:

- Ongoing misconceptions and knowledge gaps about GINA, including what it does and does not protect

- The value of case-based learning to clarify complex legal and clinical scenarios in genetic counseling

- Nuances in GINA’s protections, especially around manifested conditions and evolving genetic technologies

- Challenges in counseling patients about discrimination risk, balancing information, and navigating policy gaps like life and disability insurance coverage

Resources:

Germline genetic testing and privacy concerns in patients with mesothelioma from Genetics in Medicine

Genetic Privacy in the US: Insurance and Law Enforcement Use website

 

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 Stephanie Schofield.