Throughout August we will be throwing a spotlight on our podcast productions from the 2022/23 academic year. We continue with the Centre for Personalised Medicine podcast from the team of the same name at the University of Oxford.
We helped launch Series 2 of the podcast in 2022 after delivering our launch your podcast workshop to the team to help develop their ideas and provide them the necessary skills to create an informative, engaging and professional podcast. We still provide ongoing support through audio editing but the podcast is presented, produced and delivered by the team at the Centre. We will be returning to help launch Series 3 in November 2023.
In series 2 of the Centre for Personalised Medicine, Rachel Horton and Gabrielle Samuel interview members of the Centre for Personalised Medicine advisory board about their careers and view on personalised medicine. The series explores the promises and pitfalls of personalised medicine and discusses the ethical and societal challenge it creates.
In episode 1, Rachel and Dr Susie Weller spoke to Gabrielle Samuel (Senior Research Fellow in the Lucassen group – CELS Oxford, and research fellow for the Ethics Advisory Committee of UK Biobank) about the environmental costs of personalised medicine.
Gabby highlights the environmental challenge posed by the mass storage of data in servers, biobanks collecting and storing patient samples and use of single plastics in labs. Susie then asked about how we should balance the health benefits against the environmental cost of personalised medicine. Gabby highlighted how difficult it is to do a cost benefits analysis when so much of the benefit of personalised medicine has yet to be fully realised concluding that:
“If we really want to be sustainable, we need to make some hard choices about consumption. So, what do we want to do, and what do we not want to do? And I think personalised medicine, just as much as any other sector, needs to think about this very seriously.”
Gabrielle Samuel, Centre for Personalised Medicine (Jun 2022)
In episode 2 Gabby joined Rachel again to catch up with Professor Anneke Lucassen (Director of the Centre for Personalised Medicine) about the importance of context in genetic testing.
Anneke highlights examples of how the same genetic results mean different things depends on the individual’s sex, stage of life, reproductive potential, recent ancestry, environmental factors and immune repertoire.
Anneke’s take away message was;
“Genetics, like many other things in life are complex. And that context is so important, we must look at the context of a genetic variation… You need to look at the code around it but also the environment in which it arises.”
Anneke Lucassen, Centre for Personalised Medicine (Jul 2022)
Episode 3 saw Rachel, Gabby and Anneke return to the podcast, this time joined by our friend and co-producer of The Ethics Round Dr Lisa Ballard (Senior Research Fellow in the Clinical Ethics, Law and Society group at Southampton) to discuss sharing genetic test results with family.
They discuss the ethical challenge faced by clinicians balancing patient confidentiality against the health needs of the at-risk relatives. Lisa discusses the challenges of getting patients to communicate with at risk relatives from a behavioural psychology perspective and highlights opportunities that web based interventions provide in this area.
Lisa main message for researchers and health professionals was:
“My main message would be to the research community and health professionals, for us to start thinking about how can we go beyond that ‘To whom it may concern letter’ because the research shows that patients want to do it themselves. And they know the importance, they understand why it’s important, but then there are all these other barriers as to why it doesn’t get done, or doesn’t get done in a timely manner. So, to really start thinking, what can we do to make that job, that difficult job of passing on that information to their relative, how can we make it as easy as possible, remove as many barriers as possible?”
Lisa Ballard, Centre for Personalised Medicine (Aug 2022)
In Episode 4, Gabby spoke to Rachel and Lisa about newborn genome screening of seemingly healthy babies to detect and treat health problems early. The three discuss the ethical, logistical and financial challenge of newborn genome screening as a result of “how little we know about a lot of the genetic code and how it works” (Rachel Horton).
Rachel’s take-home message on the topic was:
“Breadth and clarity are in conflict when it comes to genome screening. And the wider you look, the more uncertainty you invite…And the more carefully we need to think about – have we planned for that? Are people prepared for that in consent conversations? Is the health service funded to deal with all the extra medical interventions that we’re going to need?”
Rachel Horton, Centre for Personalised Medicine (Oct 2022)
Episode 5 saw Susie Weller return to the podcast to discuss with Rachel and Gabby, who is the ‘patient’ in genomic medicine. The pair discussed Susie research which focuses on the ethical and social challenges that arise for those living with genetic and genomic results.
For Susie “genomic medicine really highlights the inadequacies of this individualised way of defining a ‘patient’.” She also added that
“I think that people are situated in networks of relationships, and one person’s decision will have consequences for others. And often these consequences for others are a key influence on the decisions that they might make.”
Susie Weller, Centre for Personalised Medicine (Jan 2023)
In episode 6 Rachel and Gabby spoke to Faranak Hardcastle (research fellow at the Clinical Ethics, Law and Society Group) about the legal, ethical and social challenges in diversifying data. They discuss why diversity in datasets is so important for improving health outcomes, the pitfalls of AI, the lack of diversity in genomic data repositories and biobanks and how to redress the problem.
Faranak’s take away message was that
“Clearly there is a real problem that if we don’t have representative datasets to inform genetic tests, it worsens the outcomes for people who are represented in those datasets. And this is just one example of structural racism, having a system where the quality of testing you can access is so influenced by your ancestry. But getting those datasets more representative needs to be a part of getting the whole enterprise of genomics more diverse but that’s not the goal in itself… Just collecting genomic data from people with a range of ancestries doesn’t address the diversity problem and this is because even if we have diverse data, that doesn’t mean we have considered diversity in the true meaning of the term. To include diversity means thinking about diversity in terms of inclusion of underrepresented groups in all stages of the research process, ensuring that harms and benefits are equally distributed, and to co-create knowledge so that the knowledge that is created is the knowledge that the diverse populations are interested in knowing and ensuring that the benefits of that knowledge are fed back to a community or to that diverse population.”
Faranak Hardcastle, Centre for Personalised Medicine (Mar 2023)
Episode 7 saw Rachel and Gabby catch up with Dr Kate Lyle (Senior Research Fellow at the Clinical Ethics, Law and Society group at Oxford) about why research regulations fall short in genomic medicine. They discuss the neoliberal roots of the current research ethics rules, how consent should not be the only benchmark for ethical research and the distinction between bureaucratic ethics and everyday ethics.
Kate’s final message for the research community was:
“We all need to question how we approach ethics, and particularly this role that we’ve given to consent. Consent is not the only thing, and we all need to think about our own responsibilities in relation to ensuring ethics, ethical research practice.”
Kate Lyle, Centre for Personalised Medicine (May 2023)
In the finale of the series, Rachel and Gabby spoke to Julie Young from the CanGene CanVar Patient Reference Panel about the experience of navigating a genetic diagnosis. The three discuss Julie’s diagnosis of Lynch syndrome (a genetic predisposition to some cancers), navigating discussions with family member about their genetic diagnosis and the work of the CanGene CanVar project.
Julie’s parting message for the audience was
“Definitely don’t be afraid of what might be, nothing’s for certain in life. And it could just as easily be what might not be. And also, the more awareness we raise, and the more data we gather, the greater the prevention of disease, but in the instance where there is illness, there will also be better treatments. So, it’s win-win for people.”
Julie Young, Centre for Personalised Medicine (Jun 2023)
The Centre for Personalised Medicine podcast is produced by the centre at the University of Oxford and edited by the team at Research Podcasts. You can find all these episodes as well as series one here.
If you are interested in our production services contact our Managing Director, Chris Garrington, for more information at Chris@researchpodcasts.co.uk.
Research Podcasts offer podcast consultancy, production and training for researchers and academics. Check out our various training workshops including an introduction to podcasting workshop, how to launch your podcast and our more advanced courses on podcast presenting, podcast editing, and how to build a podcast brand.
Freya Peake, Research and Administration Assistant at Research Podcasts