Event Review: How Can We Enable Ethical and Inclusive Research to Thrive?

On this episode of Behind the Genes, a podcast series from Genomics England, Dr Natalie Banner hosts researchers and participants of the EPPiGen Project, a deep dive into what it means to navigate ethically challenging situations in genomic medicine.

'How can we enable ethical and inclusive research to thrive' is a brilliant podcast focusing on exploring the realities of being ethically prepared in the era of genomic medicine.

The project emphasises the power of inclusivity and the role of artistic creation in relaying important insights to researchers, healthcare professionals, and parents of children affected by a genetic condition, on navigating the trials of the genomic era.

I am usually not one to listen to podcasts and rarely do so even when I find something interesting, therefore I was surprised with myself for being able to listen to it all the way to the end. I would like to credit this to the great production quality that incorporated important questions and timely intermissions. It never felt a hassle listening to the experts talk about the subject.

In this podcast, Dr Banner is joined by Professor Bobbie Farsides, professor of clinical and biomedical ethics and Dr Richard Gorman, senior research fellow, both at Brighton and Sussex Medical School, and Paul Arvidson a participant panel member for Genomics England.

The podcast starts off with Arvidson's poem 'Tap tap tap', which he wrote for the 'Helix of Love' poetry collection, a collection of poems from parents of children affected by rare genetic conditions (see BioNews 1218). He uses a 'chick inside an egg' metaphor to draw attention to his daughter Nenah's learning disability, vividly comparing the conflicted parental role in such difficult situations. This was a heartbreaker. I was stunned and paused the podcast to reflect on this moment.

Professor Farsides, having heard the poems herself, talked about their emotional impact, validating my feelings. She borrows Arvidson's phrase – being audacious – and reveals how the project matches it, as they recruited creative minds to tell stories of lived experiences, through poems like 'Tap tap tap', which I believe will leave a remarkable impact on many who empathise with such situations. The inclusion of this poem, and Arvidson's flawless delivery, makes the podcast worth listening by itself, which perhaps highlights how the artistic endeavour from the participants is a success story of the EPPiGen project.

Professor Farsides has defined ethical preparedness in detail as part of her research (see BioNews 1197 and 1220). She invokes the importance of including participants and recruiting them to guide the process of ethical preparedness throughout the podcast.

'We can better prepare families as well by ensuring that we tell them that their voices are valuable, that they're important, and they help rather than hinder healthcare professionals in doing their jobs.'

Professor Farsides's words summarise the inclusive nature of the EPPiGen project. This shows how important it is for people who navigate these ethically challenging areas in medicine to hear from participants, and through that shape how they respond to such challenges. I commend her thoroughness in highlighting this simple but very crucial point throughout the podcast.

I really enjoyed Dr Banner's discussion with Dr Gorman, not only because his perspectives as a researcher early on in his career are valuable to me as a listener in the field of biological research but also due to his determination to incorporate elements of ethics that we sometimes see as a hindrance to our discovery process.

He elaborates on one of the main themes of the EPPiGen project – participant perspective, especially the medium in which the stories are collected and relayed back to healthcare professionals to get a better understanding of their take on genomic services.

I found his take on 'language' very intriguing, not only as it has been helpful here for the healthcare professionals to better grasp how their patients think about genomic services and communicate with them effectively, but also – more generally – as effective scientific communication is a key theme in research. I believe researchers should perhaps adopt similar methods in communicating to the lay audiences to make it more engaging and gain more acceptance for their research.

I highly recommend this podcast to researchers in their early years from the medical and life sciences for its 'eye-opening' value addition to public engagement that is now a mandatory section in grant applications. Dr Gorman describes how incorporating artistic creations – in this case storytelling via poems as opposed to routine questionnaires – in academic research has had a massive impact in getting participants' feelings across to healthcare professionals as the EPPiGen project set out to do.

We also get to hear from two participants of the EPPiGen project, which was a valuable addition to an already great discussion. Lisa Beaton describes poetry writing invoking her raw emotions from her lived experiences, which she hopes will give insight to medical professionals on how to approach parents with ethical preparedness in the future. These insights not only add gravity to what the researchers are discussing but are also a reflective moment for the listener to acknowledge the strength of the project which the podcast tries to highlight, and I think it succeeds immensely in doing so.

I cannot end this review without praising Dr Banner for being such an incredible host, who I think plays an equally important part, if not the most important part in driving this informative discussion. I commend her for the brilliant follow-up questions that added context to aspects of ethical preparedness and inclusivity, and for maintaining a smooth flow from one subject to the other, leaving the listener engaged throughout.

On a final note, this podcast does an incredible job of drawing our attention to the importance of being ethically prepared to navigate challenges in this era of cutting-edge genomics. This discussion highlights that the voices of participants in research and ethics should not be lost in 'extractive research' but should be an inclusive endeavour that should be adopted continuously. I highly recommend this podcast to everyone who wants to engage in and values ethical and inclusive research.