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Erin Kinghorn

When the Code Speaks

A Life Sciences , Science and Health & Fitness podcast

#91 in Life Sciences · 🇿🇦
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About the show

When the Code Speaks is a South African podcast exploring what it really takes to practise genomic medicine in a complex, resource-constrained and deeply diverse context. Through open, conversational episodes with clinicians, researchers, bioinformaticians and patient advocates, the series goes beyond the science to uncover the people, systems, and decisions that shape how genomics is translated into real-world care.

Newest episodes

What Personalised Medicine Feels Like: The Human Story Behind the Science

52 min

What does personalised medicine actually feel like when you’re the person living with a rare disease? In this episode of When the Code Speaks, we step away from the science and systems of genomic medicine and into the lived experiences of Marc Bulman and Kate Olivier, two UCT students navigating their own health journeys. We talk about diagnosis, uncertainty, searching for answers, navigating healthcare and the ways patients and families often have to become researchers, advocates and educators along the way. We also explore what it means to feel heard and supported when an answer isn’t always immediately available and why genomic medicine needs to keep the people behind the data at its centre. It’s an honest conversation about rare disease, resilience, hope and what it really means to practise patient-centred genomic medicine in South Africa.

Speaking Science so it Matters: Communication in Care

49 min

Good science communication can be the difference between information being understood and information being lost. This episode explores the role of clear, accessible and compassionate communication in improving care for people living with rare and complex conditions, and in helping patients and families navigate healthcare systems. We discuss why communicating science is not just about sharing knowledge, but about building understanding, trust and better connections between patients, healthcare professionals and researchers. Guest: Dr Lienka Botha

The Genome and the People: Advocacy in Action with Rare Diseases South Africa

41 min

Patient advocacy and effective communication are fundamental to shaping the future of genomic medicine. In this episode, we explore how advocacy organisations support individuals and families affected by rare diseases, foster collaboration between patients, researchers and clinicians, and help drive more equitable, patient-centred healthcare in South Africa. We also discuss why communication should be recognised as an essential part of care, how trust is built through more human-centred conversations, and why making genomic medicine more accessible starts with the language we choose.

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All episodes

What Personalised Medicine Feels Like: The Human Story Behind the Science

52 min

What does personalised medicine actually feel like when you’re the person living with a rare disease? In this episode of When the Code Speaks, we step away from the science and systems of genomic medicine and into the lived experiences of Marc Bulman and Kate Olivier, two UCT students navigating their own health journeys. We talk about diagnosis, uncertainty, searching for answers, navigating healthcare and the ways patients and families often have to become researchers, advocates and educators along the way. We also explore what it means to feel heard and supported when an answer isn’t always immediately available and why genomic medicine needs to keep the people behind the data at its centre. It’s an honest conversation about rare disease, resilience, hope and what it really means to practise patient-centred genomic medicine in South Africa.

Speaking Science so it Matters: Communication in Care

49 min

Good science communication can be the difference between information being understood and information being lost. This episode explores the role of clear, accessible and compassionate communication in improving care for people living with rare and complex conditions, and in helping patients and families navigate healthcare systems. We discuss why communicating science is not just about sharing knowledge, but about building understanding, trust and better connections between patients, healthcare professionals and researchers. Guest: Dr Lienka Botha

The Genome and the People: Advocacy in Action with Rare Diseases South Africa

41 min

Patient advocacy and effective communication are fundamental to shaping the future of genomic medicine. In this episode, we explore how advocacy organisations support individuals and families affected by rare diseases, foster collaboration between patients, researchers and clinicians, and help drive more equitable, patient-centred healthcare in South Africa. We also discuss why communication should be recognised as an essential part of care, how trust is built through more human-centred conversations, and why making genomic medicine more accessible starts with the language we choose.

Training the Future: Building the Next Generation of Clinical Genomics Practitioners in South Africa

40 min

As genomic medicine continues to evolve, so too must the workforce that will deliver it. In this episode of When the Code Speaks, we are joined by Prof Jeannine Heckmann, Dr Tarin Europa and Mr Waheed Amanjee to discuss the importance of education, training and capacity building in shaping the future of genomic medicine in South Africa. Together, we explore the skills needed for the next generation of clinicians, scientists and healthcare professionals, the challenges of integrating genomics into healthcare education, and the value of interdisciplinary learning. From mentorship and professional development to creating opportunities for emerging scientists, this conversation examines what it will take to build a workforce equipped to translate genomic advances into better patient care.   Guests: Prof Jeannine Heckmann, Dr Tarin Europa and Mr Waheed Amanjee.

From Sample to Sequence: What Makes Large-Scale Genomics Possible

49 min

What does it actually take to generate high-quality genomic data? In this episode of When the Code Speaks, we go behind the scenes of genomic sequencing to explore the technologies, laboratories and infrastructure that make precision medicine possible. Joined by our guests, we discuss the journey from sample to sequence, the challenges of establishing and sustaining sequencing capacity in South Africa and why local infrastructure is essential for advancing both research and clinical care. From the realities of operating cutting-edge sequencing platforms to the importance of partnerships, accessibility and long-term investment, this conversation shines a light on the often-unseen systems that underpin modern genomic medicine. Guests: Dr Nadia Carstens and Acclaim Moila.

Governing the Genome: Whose Data, Whose Benefit?

54 min

As genomic medicine advances, questions around consent, data sharing, ownership and trust are becoming increasingly important. In this episode of When the Code Speaks, we are joined by Prof Jantina de Vries and Dr Melissa Nel to explore the ethical and governance challenges that sit at the heart of genomic research. Together, we discuss what responsible data stewardship looks like in an African context, why community engagement matters, how genomic data can be shared ethically and what it takes to ensure that the benefits of research are returned to the communities who make it possible. This conversation highlights the critical role of ethics in building a genomic future that is equitable, trustworthy and sustainable.

Detangling Genomic Data: The role of bioinformatics in understanding disease

1 hr 0 min

When most people think about genomic medicine, they think about patients, doctors, or DNA sequencing. But what happens after the data is generated? In this episode of When the Code Speaks, we sit down with Gideon A. Wiafe and Dr Armin Deffur to explore the world of bioinformatics; the field that transforms vast amounts of genomic data into meaningful insights that can inform research, diagnosis and patient care. Together, we unpack what bioinformaticians actually do, why African genomic data matters, the challenges of building computational capacity in South Africa and how artificial intelligence is rapidly reshaping the landscape of genomic analysis. It’s a conversation about the people and technologies working behind the scenes to make genomic medicine possible.

Genomic Data Meets Clinical Care: How doctors interpret and act on genetic findings

52 min

This episode of When the Code Speaks explores what happens when genomic data meets real clinical decision-making. Joined by Prof Alina Esterhuizen, Prof Jo Wilmshurst and Prof Karen Fieggen, this conversation unpacks the challenges of interpreting genetic findings in South Africa’s healthcare landscape — from diagnostic uncertainty and multidisciplinary collaboration to the realities of integrating genomic medicine into patient care. Together, they reflect on the promise of personalised medicine, the limitations of current systems and what it will take to build sustainable clinical genomics services locally.

Counselling in the Genomics Era: Conversations that matter

42 min

In Episode 1 of When the Code Speaks, we explore the evolving role of genetic counsellors in South Africa’s genomic medicine landscape — from supporting patients and families through difficult diagnoses to contributing to variant interpretation, research and multidisciplinary care. Joined by Nakita Laing, Nabeelah Peerbhai and Zandre Bruwer, this conversation unpacks the human side of genomic medicine and the often invisible work that connects data, diagnosis and patient care. Together, we discuss how counselling is changing in the genomic era, the challenges of working in resource-limited systems, and why investing in this profession is essential for the future of personalised medicine in South Africa.

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