Dr Natalie Banner, Paul Arvidson, Dr Rich Gorman and Professor Bobbie Farsides: How can we enable ethical and inclusive research to thrive?

In this episode of Behind the Genes, we explore how ethical
preparedness can offer a more compassionate and collaborative
approach to genomic medicine. Drawing on insights from the
EPPiGen Project, our guests discuss how creative storytelling
methods, like poetry, have helped families and professionals
navigate the complex emotional, ethical and practical realities
of genomics.


Our guests reflect on the power of involving patients and
families as equal partners in research, and how this can lead to
more inclusive, empathetic, and effective care. The conversation
explores how ethics can be a tool for support, not just
regulation, and how creating space for people to share their
stories can have a lasting impact on healthcare delivery.


Our host for this episode, Dr Natalie Banner, Director of Ethics
at Genomics England 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, member of the Genomics England
Participant Panel and the Dad's Representative for SWAN UK.


Paul shares his poem 'Tap tap tap' from the Helix of Love poetry
book and we also hear from Lisa Beaton and Jo Wright, both
members of the Participant Panel.


"The project gave us the tools to find a different way to get at
all of those things inside of all of us who were going through
that experience... It’s almost like a different lens or a
different filter to give us a way to look at all those things,
almost like a magnifying lens; you can either hold it really
close to your eye and it gives you like a blurry view of the
world that goes on and you can relax behind that and find a way
to explore things in a funny way or an interesting way, but you
can also go really close into the subject and then you’ve got to
deal with the things that are painful and the things that are
difficult and the things that have had an impact."


You can download the transcript, or read it below.


Natalie: Welcome to Behind the Genes.


Bobbie: In an earlier conversation with Paul, he used the word
‘extractive,’ and he said that he’s been involved in research
before, and looking back on it he had felt at times it could be a
little bit extractive. You come in, you ask questions, you take
the data away and analyse it, and it might only be by chance that
the participants ever know what became of things next. One of the
real principles of this project was always going to be
co-production and true collaboration with our participants. Our
participants now have a variety of ways in which they can
transport their voices into spaces that they previously found
maybe alienating, challenging, and not particularly welcoming.


Natalie: My name is Natalie Banner, I’m the Director of Ethics at
Genomics England and your host on today’s episode of Behind the
Genes. Today I’ll be joined by Paul Arvidson, a member of the
participant panel at Genomics England, Professor Bobbie Farsides,
Professor of Clinical and Biomedical Ethics at Brighton and
Sussex Medical School, and Dr Rich Gorman, Senior Research
Fellow, also at Bright and Sussex Medical School. 


Today, we’ll be exploring the ethical preparedness in genomic
medicine or EPPiGen Project. This project examined how the
promise and challenges of genomic medicine are understood and
experienced by the people at the heart of it, both the clinicians
providing care and the patients and families involved.  A
big part of the EPPiGen Project explored using creative methods
of storytelling and poetry to explore the experiences of parents
of children with rare genetic conditions.  We’ll discuss why
the idea of ethical preparedness is crucial in genomic medicine
to acknowledge the challenges and uncertainties that often
accompany the search for knowledge and treatment in genomic
healthcare, and to help professionals develop the skills to
navigate the complex ethical considerations.   


If you enjoy today’s episode we’d love your support. Please like,
share and rate us wherever you listen to your podcasts. Is there
a guest you’d really like to hear on a future episode?  Get
in touch at podcast@genomicsengland.co.uk.


So, I’m going to ask our fantastic guests to introduce
themselves.  Paul, would you like to go first?


Paul: Hi, I’m Paul Arvidson. As well as my Genomics England hat,
I’ve got a SWAN hat as well, I’m the dads’ rep for SWAN UK, and
I’m on the poets from the EPPiGen Project. 


Natalie: Brilliant to have you hear today. Thanks, Paul.
Rich? 


Rich: Hi, I’m Rich Gorman, I’m a Senior Research Fellow at
Brighton and Sussex Medical School and I’ve been working on some
of the research on the EPPiGen Project that looks at people’s
social and ethical experiences of genomic medicine, and
particularly families’ lived experiences of genomics. 


Natalie: Brilliant. Really looking forward to hearing from you.
And Bobbie? 


Bobbie: Hello, I’m Bobbie Farsides, I’m Professor of Clinical and
Biomedical Ethics at Brighton and Sussex Medical School and co-PI
with Professor Anneke Lucasson of the Wellcome Trust funded
EPPiGen Project, and it’s been my pleasure and privilege to be
involved in the work that we’re going to talk about today. 


Natalie: Really fantastic to have the 3 of you here today. So,
we’re going to take a slightly unusual approach to starting the
podcast today and we’re going to begin with Paul who’s going to
read us a poem from the book Helix of Love. Paul, over to
you. 


Paul: This is called Tap, Tap, Tap. 


‘Tap, tap, tap, I hold the egg to my ear. There it is again, tap,
tap, tap. Run to get a torch and light through the shell, to see
who’s tapping from within. Chicken’s home from work these days
just for fun and the odd egg. Market stalls swapped for
medicines, cash boxes for cough machines. We kept the apron
though. Profound learning disability is our life now, most of it,
learning about it, learning from it, surviving with it, despite.
It’s a subtle egg though, this. The shell is there, invisible,
but there’s a person inside, tap, tap, tap.  What are you
trying to tell us about what the world’s like for you? Are you
bored? Do you hurt? Is your sister a love or a pain? Tap, tap,
tap. I wish I could set you free.’ 


Natalie: Thank you, Paul. Such beautiful and powerful words. I
wonder if you wouldn’t mind telling us a little bit about that
poem and your journey and maybe touch on what the EPPiGen Project
has meant for you. 


Paul: Wow, that’s a lot to unpack in one go. I suppose the
oddness of the metaphor is probably worth a mention. The way the
project worked is that Bobbie and Rich collected together a
proper poet, Dawn Gorman, and she led us through the process of
kind of, she basically taught us all to be poets from scratch, it
was… When you say it like that it was a hugely audacious project
really to just collect all these randoms together in a room and
throw a poet at them and see what happened.  


And they trusted us, I suppose, and trusted Dawn that there was
going to be something came out of this. But one of Dawn’s
techniques was that like each week we did… I think we did… Did we
do 6 weeks, chaps? Which felt like a huge amount of time, but it
went in milliseconds. But what she did every week was that she
gave us either a poetic form to work with, like, you know, “This
week we’re going to learn how to do a haiku, or a sonnet,” or
whatever, or she’d gone away and thought of a particular poem
that she thought might resonate with us and then she’d bring that
to the session. And she’d read a poem out and then say, “Right,
what did you make of this? Go away and write what it inspires you
to write.”   


So, the poem that I wrote was, the inspiration for that session
was a poem called The Egg by Richard Skinner. His poem was more
about the form of the object itself, so, although that sounds
really abstract, it really, really helped. So, every week it
would be like Dawn threw this object into the group and said,
“Right, okay, here’s your new prompt, bosh, off you go.” And
although that sounds like the most obscure way to deal with
anything, because you get a structure around which to organise
your thoughts it was just this like hugely powerful thing for
everybody.   


And so, the thing that came to mind for me was the metaphor of
the egg rather than the egg itself and it just kind of chimed
with all of us. Like we used to run the egg stall in Minehead
farmers’ market and so, I married into a country girl and so she
had like 200 laying hens at one point, and so we had this whole
market stall antics but also it spoke to so many things in one
hit. So we gave up that part of our lives as our daughter Nenah’s
condition became more and more complex.   


She was always, once we knew what her genetic condition was one
of the few things that we knew from the get-go was that it was
progressive. So we knew in advance that that was the case, but we
didn’t know what that meant. And so slowly but surely one of the
things we had to do was give up our working life, you know, one
week and one hour at a time, it felt. So part of the poem’s about
that as well, the shift in the poem from the comedy bit to the
beginning to the more serious bits at the end, and it kind of
felt like we gave those things up day by day but the poem kind of
got to speak to that.  


And then there’s also the metaphor. Once you’ve got a good
metaphor it’s always good to run with it, you know? And so the
idea of the metaphor of somebody who’s got profound learning
disabilities and can’t speak being inside this shell and as
parents you’re always kind of peeking in from the outside to see
what’s going on within or to try and find ways, the idea of when
you’re checking to see if you’ve got a chick inside your shell,
and you do this thing called ‘candle’ where you hold the light to
it, that I describe in the poem, and you like hold it to your ear
and hear if there’s movement going on inside. And you kind of, I
don’t know, I felt with a profoundly learning-disabled child that
you always feel like you’re doing that as a parent as well to see
if what you’re doing is, you know, if you’re still communicating
while you’re trying to be a parent. 


Natalie: Fantastic. Thank you so much for sharing that with us,
Paul, both the poem and also your exploration of how you got to
that point in writing that poem.  Tremendously powerful to
kind of understand and hear about that experience.  Bobbie,
if I can come to you. Paul referred to that project as kind of
audacious, can you tell us a little bit about the origins of the
Helix of Love but also why storytelling, especially through
poetry, was so important for the EPPiGen Project? 


Bobbie: Yes, of course, Natalie. But can I start by saying I was
so pleased that you got Paul to speak for a while after because I
always have to compose myself after hearing these poems because
they really do hit so powerfully, however many times you hear
them. And I think that is part of what we wanted to achieve with
this project, we wanted to use innovative research methods, we
wanted to be…  I love the word ‘audacious’; I’m going to
borrow that.  We wanted to be audacious; we wanted to be
courageous, and let me tell you, our Ethics Committee were a
little bit worried about the sorts of things we told them we
wanted to do. But we knew because we live and work in Brighton
that the world is full of creative people and we’d already had
such wonderful partnerships with people over the years, we knew
that we could draw people into this project who would help us to
work with this fabulous group of parents ,in a way that would
give them, as Paul says, an opportunity to explore their own
feelings and their own experience and share it as they
wished.   


In an earlier conversation with Paul, which he might find
surprising that it’s stuck with me so much, he used the word
‘extractive’ and he said that he’d been involved in research
before and looking back on it he had felt at times it could be a
little bit extractive. You come in, you ask questions, you take
the data away and analyse it and it might only be by chance that
the participants ever know what became of things next. One of the
real principles of this project was always going to be
co-production and true collaboration with our participants, and
the poetry project probably wouldn’t have come about if it hadn’t
been for the passion of one of our participants who was sort of
finding a love for poetry herself and said, “Can we try this
next?” So, you know, it means so much to Rich and I that we ended
up with this amazing book, but it’s not our book, it’s our
poets’, as we like to refer to them, book.  


So, one of the things that we are so pleased about in this
project is that our participants now have a variety of ways in
which they can transport their voices into spaces that they
previously found maybe alienating, challenging, and not
particularly welcoming. And I think another wonderful upshot from
this project has been how receptive people have been to the work.
And it’s a sort of commonly held myth that your average
philosophy article has a readership of 3.4 people. Rich created a
wonderful map to show how Helix has travelled round the world and
touched thousands of people – I don’t think that’s an
exaggeration – and we couldn’t be more grateful for that as
researchers because we feel as passionately about these subjects
as our participants and it is they who have really got this
project on the map. Paul, you were going to come in, I
hope. 


Paul: I feel like the one thing that this project really did was,
I know PPIE is a phrase that’s bandied round but this project
kind of stripped that theme apart and took the ‘I’ bit, this
project is like built around inclusion and because it felt like,
if we’d have just been jumping in a room with Dawn and told to
get on with it, I don’t think it would’ve worked as well. The
idea that it was kind of curated by Bobbie and Rich, we very much
felt like our hands were held through the process, and after them
having had to kick down doors in the Ethics Department to be able
to get the project through at all, it’s like “What are you going
to do to these poor parents?” having gone through that process
themselves behind the scenes, then to kind of feel like we were
guided through this process. And we were guided and held, and
they were super-aware of all of us. And the fact that every time
you tell these stories as a parent who’s gone through them
there’s a cost. And we’ve had this discussion with the panel
before and the communication group, about the fact that every
time you come to a parent and say, “Tell us your story” there’s a
cost.  


And so, they were aware of that, and they held that in both of
their hands and so it couldn’t have been anything other than this
collaborative project by the time we’d finished. 


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Natalie: We’re going to hear a clip from Lisa Beaton, a member of
the participant panel at Genomics England, who shares what it has
meant for her to take part in the project. 


Lisa: It was an amazing opportunity. I had a huge sense of
imposter syndrome actually when I as invited to join, because I
was aware of some of the people who’d already taken part in the
project and although I can bring lived experience to the table I
don’t really consider myself as a creative writer or anything
like that, although I do enjoy it. When I first started in the
group, we were just doing free-flowing writing. It was really
cathartic, and I didn’t expect that in any way, shape or form. To
put pen to paper without necessarily having any strategy in mind,
just letting the thoughts come out and ramble away, I didn’t
really know what was going to come blurting out onto my notepad,
and reading some of it back was moving but it was frustrating. It
was moving, it was everything really, that opportunity just as a
safe space, knowing I didn’t have to share it with anybody if I
didn’t want to but I could, and I could just, I suppose I would
call it almost like a brain fart, it just rambled away and maybe
it was a way of downloading some of the emotions that I was
carrying.  


As the project went on and we explored different creative mediums
I really enjoyed that and found different skills that I wouldn’t
have thought about. And it was very thought-provoking, being able
to go back and think about some of our very early experiences,
which is, not that I’ve buried them but it’s just you move on to
deal with the here and now, and it brought me back to some of
those very raw emotions of the first days which I think are, I
hope, helpful to certainly the medical community in terms of
thinking about how they talk to new parents going through similar
situations. I was very grateful. 


Natalie: Rich, I’d like to come to you now. As Bobbie and Paul
have both mentioned, the outputs for this project have really
spread far and wide and maybe beyond the kind of academic circles
that you might typically think. I’d really like to hear from you
about how you think the project has helped healthcare
professionals, particularly really enabling them to understand a
little bit more about what it means to be part of a genomic
healthcare service and the journey that patients and families go
through. Would you share a little bit about your experience in
the project, particularly for healthcare professionals? 


Rich: Yeah, I mean, that was one of the things that when Bobbie
and I set out to do this, that was one of the real aims, was to
sort of help healthcare professionals have a bit more of an
insight into what it means to access genomic medicine services
from a patient or family perspective. And, as Bobbie said, there
were 2 ways we could have gone and done this; we could’ve done
some sort of conventional social science interviews, written that
up in a lovely social science or philosophy journal article and
no one would’ve probably read it, but instead we thought about
the power of the arts to actually change in terms of how we were
sort of collecting and collating people’s stories and then how we
were sharing and disseminating those stories as well. And I think
the medium by which stories are told affect the kind of stories
that get told, as Paul was sort of hinting at
earlier.   


When we ask patients to tell us their story, you know, there’s a
level of expectation there about what people are being asked to
say in a form in a way, and certainly we didn’t get people in a
room and say, “You must write about genomics.” So many of the
poems in the collection aren’t really about sequencing or big
data, they’re about these kind of much wider themes of everyday
life. And I think that’s been really powerful in allowing
healthcare professionals to sort of understand for patients
obviously genomics is really important but it’s not the be all
and end all of everything that’s going on in their lives, you
know, there are so many other pressures, so many other hopes and
desires, and people want an opportunity to express some of those
positive aspects of their life with their loved ones and it not
just be medicalised all of the time.   


Again, as Bobbie said, it’s also opened up our research
travelling really well and just become something that’s really
accessible for people to pick up and read through, and I’ve had
conversations with healthcare professionals that have said, “Oh I
read through the book of poetry and it’s made me realise all of
these things.” Language particularly has been a really prominent
theme that people have reported, telling us they’ve learnt a lot
about it, and thinking about how they write their letters and how
they communicate with people. And obviously this isn’t new, you
know, bioethicists for years have been talking about the need to
communicate very carefully, very precisely and in a caring way,
but I think there’s something about communicating those messages
through a really powerful art form like poetry through patients’
own words that allows clinicians and healthcare professionals to
sort of really get the impact of that in a very, very powerful
way. 


Natalie: Thanks, Rich, really helpful insights there. I really
want to pick up on your point about language and come back to
Paul on that because I know that’s a topic area that can often
be, you know, hugely sensitive to families that the
medicalisation, the terminology that’s used, especially, you
know, complex areas like genomics, coming back to this term we
mentioned earlier about being sort of alienating. How have you
found that the work through the EpiGen project and Helix of Love,
has it potentially helped the way that families can think about
the right sorts of language and enable health professionals to
sort of approach some of these questions in a slightly more human
way?


Paul: Difficult to say. It’s a very, very live topic all the
time. There’s like a backchat communications channel with the
Genomics England panel where, because we all go along and do this
thing, but we all share that genomics common thread in our
lives. One parent was breaking their heart about the fact that
they’d had sight of genetic science reports that basically
described their child, and children like them as ‘lumped
together’ in a project, and she was gutted about it. And we all
were as well, and we were all open-mouthed about it. The whole
idea of kind of separating the science and the science language
out from the people who are involved, it is our job, isn’t it,
you know, our job as the panel members is to remind people that
those are people, not statistics. But it’s a really live subject
and the more people, the more professionals who can be reminded
of that on a daily basis and the more we can find kind and open
ways to deliver that message to professionals, and every single
day that we do that makes a difference, I think. If one parent
has to get less of a letter like that or one professional thinks
more carefully about how they phrase stuff before it goes out the
door, then that’s one less parent who’s got to go through
that. 


Natalie: Absolutely. And I’m thinking about that insight. I
suppose the anticipation and the realisation to healthcare
professionals about the impact of the way they approach things,
the language they use, the kind of mindset they might adopt with
parents and families, one really important aspect of the project
was to do sort of preparedness and the idea that you should be
able to anticipate and plan for and acknowledge some of the
ethical challenges that might come through when you’re dealing
with questions of genomic healthcare where there may be lots of
uncertainty, there may be a long journey to go
through.  


Bobbie, can I come to you to help us unpack this notion of
ethical preparedness as a core theme for EPPiGen? Help us
understand what that means in kind of simple terms and why does
it matter for those who are working in the genomic medicine and
healthcare space. 


Bobbie: I think the way in which most people will have heard of
this concept of preparedness is in relation to disaster planning.
We know that some of the good things we try and do in life are
also potentially fraught with challenges and difficulties just
because of their complexity and because of the wide range of
people and organisations that will be involved. Can we take this
idea of preparedness and almost say, “You have a moral
responsibility to be ethically prepared when, for example, you
embark upon a really dramatic change in healthcare delivery or an
introduction of fantastic new healthcare
innovation”?   


And genomics seemed to be the perfect case study for this. We
then had to say, “What does that actually mean in practice?” And
I think here we wanted to move away from the idea that you can
ethically prepare people by putting a small albeit very expert
and clever group of people in a room to write guidance and
regulations, those things are needed and they’re useful. But it’s
actually much more important to almost recruit everybody, to
bring everybody up to speed, so that the ethical challenges
aren’t a complete shock to those who are delivering the service
in the frontline, so that those who plan systems actually think
whilst doing so of the ethical challenges that can be posed by
the tasks they’re attempting to achieve.   


And I was a sort of founder member of the Ethics Advisory
Committee at Genomics England, and it was so interesting in those
early days because there were no patients, there were no
participants. We were sitting alongside people whilst they
designed and put in place basic processes, strategies and ethics
was a part of that. And a really important part of that to me, at
those meetings, was hearing what the potential participants had
to say about it because, again, the Participant Panel was
involved. And I found that those were my people, those were the
people who were worrying about, concerned about the same things
as I was. 


So, I think to be prepared we have to take on the responsibility
of giving people who work in ethically challenging areas
opportunities to come together to acknowledge the complexity of
the task, to share strategies and tools, but also, very
importantly, to not become divorced from the people that they are
attempting to serve, because in fact we feel that this part of
our project, and our project is much bigger than this and we’ve
done some fantastic things working with healthcare professionals,
medical scientists, etc, etc, but this part of the project is an
attempt to say, “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.” 


Natalie: That’s a really important point around the idea that
this approach can help, can be positive. Because I think
sometimes you think about preparedness and, and quite often with
ethics it’s about risk, it’s about, you know, “How do we avoid
the risks?” but there’s a very positive story to tell about
taking a more preparedness-type approach to thinking through
ethical complexities, challenges and so on, both for health
professionals and, as you say, for families. I wonder if you
could just talk a little bit more about the kind of positive
aspects that that can bring to everyone in that genomics
healthcare journey, both the health professionals and the
families.  Because I think sometimes it’s easy just to think
that it’s mostly about sort of avoiding the risks and the
pitfalls, and that might be harder to engage with people if you
take that sort of risk-based approach. 


Bobbie: Yeah, it’s an interesting one. I think the ability to
confront risk and uncertainty is a sign of maturity. And we find
medical students, for example, hate any sense of uncertainty;
they want to be told how to do something and they want to know
that they’ll be able to do that thing and get it right. And our
job is often to say, “Well it’s not going to be as easy as that,
in fact it might be impossible, and here’s what you have to do
instead and here’s how you allow yourself to fail or to not
achieve in the way that you want but still do something really
meaningful for the people that you’re caring for.” 


So, I think there’s that aspect of saying, “It’s part of medical
education, it’s part of how we should think in organisations that
wherever you take risks, wherever you try to push frontiers, blur
boundaries…”  I mean, genomic medicine has done something
really interesting in terms of blurring the boundary between
scientific research and clinical care. Wherever you do these
things there are going to be challenges but those challenges,
they’re fascinating, they’re interesting, they can bring us
together. If we’ve got a shared will to get through them, you
know, to make things work, then it’s enlivens what you’re doing;
it’s not a barrier.  


I sort of began teaching and working in the space of bioethics
right back in the ‘80s, which is a shock to you, I’m sure, but in
those days I’m afraid that ethics was seen as a block, a barrier,
a hurdle that people had to get over or through. And I think
there’s still a sensitivity, and certainly, I myself have been
sort of challenged on critiques that I have offered to say, “Oh
that’s a bit harsh.” But I think what ethics attempts to do now,
and certainly through really putting a positive spin on this idea
of working together to establish ethical preparedness in
important spaces, is to show that actually ethics can be very
facilitative, it can be very supportive, and it can help people.
It’s not a surveillance mechanism, it’s actually another clinical
tool and something that, you know, people should seek support
around. 


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Natalie: Rich, if I could come to you thinking about that
reframing, I suppose, in your own research practice as an early
career researcher, whether you’re seeing that maturity in
approach in thinking about some of these really complex, knotty
ethical questions in genomics, are you seeing a greater
appreciation for those?  And where do you think you’re going
to take your research as a result of this project in that
space? 


Rich: Yeah, thanks, that’s a great question. Yeah, I think so,
and I think one of the things that’s really been revealing in
this is the appetite for this kind of work in the sort of
genomics sector, an appetite for thinking about the sort of
complex ethical issues, for engaging with kind of arts-based
research, for sort of finding new language and new spaces to
involve patient and family perspectives and stories and think
about how we can learn from them.   


I think in the highly scientific, highly technical space of
genomics we often assume that everyone wants numbers and hard
data but actually I think the way that this work has travelled,
the amount of invitations we’ve had to sort of exhibit this work
and talk to healthcare professionals and scientists about this
work shows that there’s this really rich appetite for thinking
about this complexity and doing that work of ethical
preparedness, as Bobbie’s talked about, and I think it’s
fascinating. And I know a lot of the participants who joined in
our project have also sort of had opportunities from being
involved in our work and found that there are people that want to
listen to their voices and hear from them and learn from them as
well. So that’s been really exciting, and I hope it will continue
and I hope there’s opportunities for much more interdisciplinary
collaboration in the genomics space with philosophers, with
social scientists with ethicists, with artists and, importantly,
with patients.   


Paul: You mentioned the idea that certainly the poetry at the
very least has allowed those voices to get into different spaces,
and I think when those things first started happening it was when
we at least as the people who’d written the poems felt that there
was a huge big impact from this stuff. And I wasn’t the first one
to read one of these poems out loud, and in a way the collection
of poetry became bigger than the sum of its parts in a funny kind
of a way. And I can’t remember but somebody read one of the poems
at a conference somewhere and they said at the end of it that you
could’ve heard a pin drop, and it was just that thought that
actually with a big audience expecting kind of quite dry subject
matter about genetics, to have felt that moment where the poem
got launched off the stage and then it impacted on the audience
and then, the way they described it, you could almost kind of
feel them describing the ripples of the poem just like spreading
out amongst this kind of silent audience and everyone kind of
taking this kind of mental sigh of like “Oh that’s what it feels
like.” And the idea of that happening was when, for me anyway,
when we knew that what we’d created was bigger than the sum of
its parts and had its own legs, Bobbie and Rich had been the Dr
Frankensteins of this kind of amazing, beautiful monster.


Natalie: Obviously the poetry’s got into your soul, Paul, the
metaphors are fantastic. But just to make sure we bring in even
more participant voices and perspectives into this we’re just
going to hear now from Jo Wright, who’s another member of the
participant panel, who’s going to share what the project and the
participant in it has meant for her. 


Jo: So being part of the EPPiGen Project, it helped me to find my
voice in an area that was relatively new to me, and also it was a
way to take control of my own experiences rather than feel like
I’m being swept along by a lot of systems.   


And there were things that I really value that I thought
contributed to making the project so successful. One was that
they asked the question “What is this experience like for you,
the experience of being part of a research project, the 100,000
Genomes experience of waiting, the experience of having your data
in the library?” And no one had asked that before. You go to your
appointments and you’re in the system and, you know, it’s kind
of, everyone was finding their way to some extent because it was
new for all the clinicians as well, but the fact that they asked,
because no one asked that before, I don’t have an outlet for
that.    


And then the other thing was that it was completely open so there
was no research interview or questionnaire to answer, no
expectation about what it was going to look like at the end. And
I think working that way really strengthened the connection
between us as parents of children with rare conditions and then
also our relationships with Bobbie and Rich as the researchers
and with the wider clinical community when they started to see
our work and respond to it. So it was a way to understand
people’s individual experiences but it also made us feel
connected and empowered through sort of like shared human
experience, and that could be between us as the participants but
also shared experiences between us and the researchers or us and
clinicians and scientists that were looking at what we’ve
done. 


Natalie: So we’ve heard lots about the experience of
participating in this fantastic EPPiGen Project, the kind of
creative storytelling methods, the audacious methods that have
been used, and some fantastic impacts beyond the kind of typical
what could be quite dry sort of academic circles that this kind
of work has spread out to.  I’d be really interested to hear
from each of you about the takeaways, what you’ve learned, what’s
changed for you and what you’d like our listeners to really
understand about this project and the work, and the sort of
outputs from it and the ways it might continue to have resonance
and impact going into the future, so whether people are patients,
families, clinicians, researchers. What would you like people to
remember and what’s affected you most about the project? 
 


Bobbie, I might start with you. 


Bobbie: I think we have to always be very careful when we get
excited about something - and the ‘we’ here are the people in the
health community, the education community, etc - to remember. As
Rich said earlier, that this is only ever going to be quite a
small part of other people’s lives. You know, we’ve all devoted
big parts of our careers, our enthusiasm, to thinking about
genomics, to working in this space. I would really like people to
pick up the book and work to understand a bit better about the
everyday lives, the hopes, the expectations, the fears of the
families who may or may not get a diagnosis, may or may not get
on a good treatment path, all of whom want the best for
themselves and everybody else from this
venture.   


But, as Paul knows better than most, it won’t come to everybody,
and we don’t want anybody to be forgotten along the way. The
people that signed up for Genomics England as participants were
pioneers alongside medics and the scientists, and in these early
years we want their experience to be recognised, and their
experience goes much beyond their interaction with Genomics
England and, unfortunately, all the work that we’ve produced
shows how many challenges families have to face to secure a good
life for their children, and I just want us all to just keep that
in mind.   


Natalie: Incredibly important to maintain that focus, that
awareness. And, as you say, Bobbie, there’s an interesting
balance where there is a need for the drive and the innovation
and the ambition to help ensure that we are pushing at the
forefront of medical research but not leaving people behind and
not ever forgetting, as you say, the experience of people who are
actually at the forefront of this research and of genomic
healthcare.  


Paul, could I ask for your perspectives on this, and particularly
how you see patient voices being involved in the future of
genomic medicine, especially in light of your experience in the
EPPiGen Project? 


Paul: I think the biggest surprise and biggest takeaway for me
was the project gave me, I mean, I can’t speak necessarily for
all the other poets, but you only need the evidence in the book
itself. They gave us the tools, the project gave us the tools to
find a different way to get at all of those things inside of all
of us who were going through that experience. So it gave us a way
to talk about all of those things and a way that was I suppose
slightly removed to start with. It’s almost like a different lens
or a different filter to give us a way to look at all those
things, almost like a magnifying lens; you can either hold it
really close to your eye and it gives you like a blurry view of
the world that goes on and you can relax behind that and find a
way to explore things in a funny way or an interesting way, but
you can also go really close into the subject and then you’ve got
to deal with the things that are painful and the things that are
difficult and the things that have had an
impact.   


But, because you’ve got that tool and you’re used to using it or
you’re familiar with using it, it then gives you that safety.
That’s how I felt about it anyway, it was a massive tool to be
able to get behind all of these things that I didn’t even know I
was feeling, or I knew they were making me uncomfortable, but I
didn’t know what they were or what name to give them. So the
poetry gave us a chance to get behind all of that. Having read
the poems, it feels like it’s that for everybody but obviously
you’d have to speak to them to know, but it certainly felt like
that for me. 


Natalie: And, Rich, your perspective.  What are you taking
forward from the project, so what would your sort of key takeaway
be? 


Rich: I think it shows what is possible under that PPIE acronym.
And there are many ways to do that involvement and engagement, it
doesn’t have to be a sort of dry tick-box exercise, there are
much more creative ways to bring people’s lived experiences and
perspectives into conversations with genomics. So really, I
suppose it’s a call for other people to explore working in this
way as well and think about what other kind of creative outputs
could work here. I mean, we’ve had huge success, and I think a
really interesting impact from working in this
way.   


And certainly as an early career researcher it’s been really
formative in my sort of academic journey, you know, reaffirmed
that this is the kind of work that I want to do, working in this
really co-productive way. And I think it’s possible, it can be
done, and, you know, ultimately it’s just been a real privilege
to do this kind of research, to sort of be trusted to sort of
hold a space together for sharing people’s stories and give
people a platform to share some really powerful profound stories.
And going back to what Paul was saying earlier, I think he hit
the nail on the head, as he very often does, this is about
evoking people’s experiences, not just explaining people’s
experiences, and allowing those stories to travel.  And we
don’t know where stories will travel, we don’t know how stories
will travel, we don’t know how stories will be received, but we
know that they do sort of travel and they do have legacy and they
stay memorable to people, they have emotional resonance. So, the
impact of this work can often be hard to sort of pin down really
specifically, but we know those stories are out there and people
are listening and changing their practice as a result. 


Natalie: We’ll wrap up there. I’d like to thank our guests, Paul
Arvidson, Professor Bobbie Farsides and Dr Rich Gorman, for
joining me today as we discuss the EPPiGen Project. We heard some
powerful insights from patients and families about their
experiences, and why ethical preparedness is so important in the
context of genomic medicine. If you would like to hear more like
this, please subscribe to Behind the Genes on your favourite
podcast app. Thank you for listening. I’ve been your host,
Natalie Banner. This podcast was edited by Bill Griffin at
Ventoux Digital and produced by Naimah Callachand.