#30-Reflecting Real Patient Experiences: Innovative Clinical Research Methods

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.