Dr Harriet Etheredge, Gordon Bedford, Suzalee Blair-Gordon and Suzannah Kinsella: How do people feel about using genomic data to guide health across a lifetime?

In this episode of Behind the Genes, we explore the hopes,
concerns and complex questions raised by the idea of a lifetime
genome — a single genomic record used across a person’s life to
guide healthcare decisions. Drawing on conversations from
Genomics England’s Public Standing Group on the lifetime genome,
our guests explore what it might mean for individuals, families
and society to have their genome stored from birth, and how it
could transform healthcare.


The discussion reflects on the potential for earlier diagnoses,
better treatments and long-term prevention, alongside pressing
ethical concerns such as data security, consent, and the impact
on family dynamics. Participants share their views and discuss
the future role of genomic data in medicine, with insights into
how trust, equity and public dialogue must shape this evolving
field.


Our host for this episode, Dr Harriet Etheredge, is joined by
Suzalee Blair-Gordon and Gordon Bedford, two members of the
Genomics England’s Public Standing Group on the lifetime genome,
and Suzannah Kinsella, Senior Associate at Hopkins Van Mil, a
social sciences research agency that helped to facilitate this
work. Together, they consider the broader societal implications
of lifetime genomic data, and how public involvement can help
guide policy and practice in the UK and beyond.


This conversation is part of our ongoing work through the
Generation Study, exploring how genomics can be used responsibly
and meaningfully from birth onwards. You can listen to some of
our Generation Study episodes by following the links below.


What can we learn from the Generation Study?

How has design research shaped the Generation Study?

What do parents want to know about the Generation Study?



 


"This isn’t just a science project, it’s about designing a future
where everyone feels included and protected. We need more
voices, parents, young people, underrepresented communities, to
keep shaping it in the right direction."


 


You can download the transcript, or read it below.


Harriet: Welcome to Behind the Genes.


Suzalee: I have come to terms with the thought that life is
unpredictable and I have already begun to accept any health
condition that comes my way. Believe you me, I have been
through the stage of denial, and yes, I have frozen upon hearing
health diagnoses in the past but now I believe that I am a bit
wiser to accept the things that I cannot change and to prepare to
face the symptoms of whatever illness I am to be dealt with or to
be dealt to me. If the analysis of my genome can help me to
prepare, then yes, I am going to welcome this programme with open
arms. 


Harriet: My name is Harriet Etheredge, and I am the Ethics Lead
on the Newborn Genomes Programme here at Genomic England. On
today’s episode I’m joined by 3 really special guests,
Suzalee Blair and Gordon Bedford, who are members of Genomics
England’s Public Standing Group on Lifetime Genomes, and Suzannah
Kinsella, Senior Associate at Hopkins Van Mil, a social sciences
research agency that has helped us to facilitate this work. 


Today we’ll be discussing the concept of the lifetime genome.
What do we mean when we say, ‘lifetime genome’? How can we
realise the promise of the lifetime genome to benefit people’s
healthcare whilst at the same time really appreciating and
understanding the very real risks associated? How do we
collectively navigate ethical issues emerging at this genomic
frontier?


If you enjoy today’s episode, we would really love your
support. Please share, like and give us a 5-star rating
wherever you listen to your podcasts. And if there’s a guest
that you’d love to hear on a future episode of Behind the Genes,
please contact us on podcast@genomicsengland.co.uk.


Let’s get on with the show. I’ll start off by asking our guests
to please introduce yourselves.  Suzalee, over to you. 


Suzalee: Thanks, Harriet. So I am a proud mum of two kids,
teacher of computing at one of the best academic trusts in the
UK, and I am also a sickler, and for those who don’t know what
that means, I am living with sickle cell disease. 


Harriet: Thank you so much, Suzalee. Gordon, over to
you. 


Gordon: I’m Gordon Bedford, I’m a pharmacist based in The
Midlands. I’ve worked in hospital and community
pharmacy. I have a genetic condition, which I won’t disclose
on the podcast but that was my sort of position coming into this
as I’m not a parent of children, but it was coming in from my
perspective as a pharmacist professional and as a member of
society as well. 


Harriet: Thank you so much, Gordon. And, last but certainly
not least, Suzannah. 


Suzannah: So, yes, Suzannah Kinsella. I am a social researcher at
Hopkins Van Mil, and I had the pleasure of facilitating all of
the workshops where we gathered together the Public Standing
Group and working on reporting the outcome from our discussions,
so delighted to be coming in from South London.


Harriet: Thank you so much, everyone, and it’s such a pleasure to
have you here today. So, many regular listeners to Behind
the Genes will now that Genomics England is currently undertaking
the Generation Study. I’m not going to speak about it in
much detail because the Generation Study has already been the
subject of several Behind the Genes podcasts and we’ll put some
links to these in the show notes for this episode. But
briefly, the Generation Study aims to analyse whole genomes of
100,000 newborn babies across England, looking for 250 rare
conditions. We have a view to getting these children onto
treatments earlier and potentially enhancing their lives. 


The Generation Study is a research project because we don’t know
if the application of this technology will work. And as a
research project we can also answer other important questions,
such as questions about a lifetime genome. When we invite parents
to consent to the Generation Study on behalf of their newborn
babies, we ask to store babies’ genomic data and linked
healthcare data in our trusted research environment.  This
helps us to further research into genes and health.


But a critical question is ‘what do we do with these data long
term?’ And one of the potential long-term uses of the data is to
revisit it and re-analyse it over a person’s lifetime.  We
could do this at critical transition points in life, like
adolescence, early adulthood or older age, with the aim of using
the genomic data to really enhance people’s health. But this is a
very new concept. There’s been little work on it internationally,
however I am pleased to say that interest seems to be picking up.


In the Generation Study, whilst we are at the present time doing
no lifetime genomes work, we are looking to explore the benefits,
risks and potential uses of the lifetime genome.  This
Public Standing Group on lifetime genomes was our first foray
into this area.  So, I’d like to start off by inviting
Suzannah to please explain a bit more about what the Public
Standing Group is, why it was created and how a group like this
helps us to generate early deliberation and insight. 


Suzannah: So, the first thing I should talk about is who were
these 26 people that formed part of this group, and the first
thing to say is that they were a wide range of ages and
backgrounds from across England, so some from Newcastle, some
from London and everywhere in between. And these 26 people all
had one thing in common, which is they had all taken part in a
previous Genomics England public dialogue, either the whole
genome sequencing for newborn screening which took place in 2021,
or in a more recent one in about 2022/23 which was looking at
what should Genomics England think about in terms of research
access to data that’s drawn from the Generation Study.


So, the great thing was that everybody had already some previous
knowledge around genomics, but the concept of a lifetime genome
was completely new. So these 26 people met on 5 occasions over
the period of 2024, mostly meeting face to face, and really the
task that they were given was to look at the lifetime genome and
look at it from every angle; consent, use, information sharing
and all sorts of other aspects as well.


Harriet: Gordon and Suzalee, you were participants in our Public
Standing Group, I’d love to hear from you what your roles in the
Standing Group were and what you found most interesting, but also
for you which bits were the most challenging. Suzalee, shall we
start with you?


Suzalee: For me the most interesting bits were being able to
learn about one’s genome and, through Genomics England and their
possible use of pharmacogenetics, could determine the specific
medication that could be prescribed for a new health condition
instead of expensive and possibly tonnes of adverse side effects
trial and error medications.


Additionally, as a person living with sickle cell disease, I got
the chance to share my story and to give voice to people living
with the same condition or similar to myself, and how the
potential of the genomics newborn programme could help our future
generation.


There were some tricky bits, and the most challenging bit was to
initially discuss and think about the idea of whether or not a
parent might choose to know or not to know the potential of their
newborn developing or prone to develop a certain condition based
on the data received from the programme. My thought went back to
when I gave birth to my first child 16 years ago and I was
adamant to know if my child would inherit the sickle cell
disease, what type, if it would be the trait. In my mind I knew
the result, as my haemoglobin is SC and their dad is normal, but
I wanted to be sure of my child’s specific trait. But then I
asked myself, “What if my child was part of the Newborn Genomes
Programme, then the possibility exists that other health
conditions could be detected through the deep analysis of my
child’s genome. Would I really want to know then? What would be
the psychological effect or, in some cases, the social impact of
what I have to learn?”


Harriet: Thank you so much, Suzalee. And I think it’s just
wonderful to hear about the personal impacts that this kind of
work can have and thank you for bringing that to us. 
Gordon, I’ll hand over to you. I’d be really interested in your
thoughts on this.


Gordon: So my role in the Public Standing Group was to give my
section of society my experiences in life to bring them together
with other people, so experiences like Suzalee and the 24 other
people that joined us on the study, to bring our opinions
together, to bring our wide knowledge and group experiences of
life. And it’s important to have a wide group, because it forces
us to wrestle with differences of opinion. Not everybody thinks
like I do.  As a pharmacist, I can see the practical side of
genomics, like pharmacogenomics, where we could use a baby’s
genome to predict how they’ll respond to drugs over their
lifetime. That’s a game-changer for avoiding adverse reactions or
ineffective treatments, but not everybody’s sold on it.


Some in our group worried about privacy, who gets this data, or
ethics, like whether it’s fair to sequence a baby who can’t say
yes or no. I get that. I don’t have children, but I hear those
things clearly. The most interesting bits for me, the
pharmacogenomics discussion in meeting two stood out, everyone
could see the tangible benefits of tailoring medicines to a
person’s genome, making treatments more effective, and in Meeting
5 designing our own lifetime genome resource was also
fascinating. Ideas like it for public health research showed how
far-reaching this could be. Some of the challenging sides of
things that I came across, the toughest part was grappling with
unknowns in Meeting 4, like how to share genetic info with your
family without damaging relationships. Those risks felt real, and
it was hard to balance them against the benefits, especially when
trust from groups like minority ethnic communities is at stake.


Harriet: Thank you so much, Gordon. I think from you and Suzalee
it’s so fascinating to hear how you were grappling, I think, with
some of your personal and professional feelings about this and
your deeply-held personal views and bringing those first of all
out into the open, which is something that is very brave and we
really respect and admire you doing that, and also then
understanding that people do hold very different views about
these issues. And that’s why bring these issues to an engagement
forum because it’s important for us to hear those views and to
really understand how people are considering these really tricky
ethical issues.


So, Suzalee, I’m wondering from your perspective how do you feel
we can really be respectful towards other people’s points of
view?


Suzalee: Yes, Harriet. In spite of the fact that we had
different viewpoints on some topics discussed, every member,
researcher, presenter and guests were respectful of each other’s
point of view. We all listened to each other with keen eyes,
or sometime squinted eyes, with a hand on the chin which showed
that what was being said was being processed or
interpreted. All our views were recorded by our researchers
for further discussion and analysis, therefore I felt heard, and
I believe we all felt heard. 


Harriet: Do you have any examples that you can recall from the
groups where there were differing points of view and how we
navigated those?


Gordon: Where we had screening at age 5, but we agreed on an
opt-out model, because it could help spot issues early. But some
worried - psychological impacts, knowing too much too soon. But
we looked at an opt-out model rather than an opt-in model because
it’s easier to say to somebody, “If you don’t want to continue
with this, opt out” rather than trying to get everybody opting in
at every different age range. So, as we reach the age of 5, 10,
15, 20, whatever, it’s easier to get people to opt out if they no
longer want to be part of that rather than trying to get them to
opt in at each stage throughout their life.


Harriet: Suzannah, do you have anything to add there as a
facilitator? How did you feel about bringing these different
points of view together?


Suzannah: Yeah, you asked about where are the tensions, where do
people maybe agree a bit less or agree and hold different views,
and I think what stands out is particularly…  There was an
idea floated by one of the speakers about you could have your DNA
data on an NHS app and then, let’s say if you’re in an emergency,
a paramedic could have access to it or others. And that really I
think brought out quite a wide range of perspectives of some in
the group feeling, “You know what, anyone who has an interest,
anyone that can help my health, let them have access to it as and
when, completely fine,” and others took a more cautious approach
saying, “This is my DNA, this is who I am, this is unique to me,
my goodness, if someone, some rogue agent manages to crash the
system and get hold if it goodness knows what nightmare scenario
it could result in,” and so had a much more keep it locked down,
keep it very limited approach to having access to your lifetime
genome data and so on. So that was a really interesting example
of people going, “Yep, make it free” and others going, “No, just
for very specific NHS roles,” which I thought was fascinating.


Harriet: Yeah, thank you so much, Suzannah. And I think it’s a
real tangible challenge that those of us working in this area are
trying to grapple with, is finding the middle ground here with
all of the challenges that this involves, for instance, our data
infrastructure and the locations at which data are held.


Advert: The Genomics England Research Summit is fast approaching
and registration is now open! Join us for this one day in-person
event on Tuesday 17 June 2025. This year’s agenda dives into rare
condition diagnosis, cancer genomics, pharmacogenomics,
therapeutic trials, and the impact of emerging technologies. Hear
from leading experts and inspirational speakers as we explore the
present and future of genomics and the latest research and
technology from the Genomics England research community. Keep an
eye on the website, genomicsresearchsummit.co.uk for all the
details and to secure your spot. Spaces are limited, so don’t
miss out. We’ll see you at the summit!


Harriet: I think this brings us really nicely onto looking at
some of the ethical, legal and social issues that we need to
think through when we’re considering the lifetime genome. 
I’m wondering if we can expand on some of these and the
importance of addressing them. Gordon, would you like to give us
your thoughts?


Gordon: Sure, thank you. Our job was to dig into how a baby’s
genome could be used over the lifetime, think pharmacogenetics
for better drugs, early childhood screening for conditions or
carrier testing to inform family planning. We saw huge potential
for individual health like catching diseases early, but also
broader impacts like reducing NHS costs through prevention.
Weighing the risks and benefits. The benefits like earlier
diagnosis or research breakthroughs grew clearer over time with
ratings rising from 4.1 to 4.7 - that’s out of, I believe, a
figure of 5, but risks like data breaches and family tensions
over shared genetics stayed significant. We agreed the benefits
could outweigh the risks but only with mitigations like
transparent governance and strong security. And what are the
global implications moving forward? What we discussed isn’t just
for the UK, it’s feeding into the global conversation about
newborns in genomic research. That responsibility made us think
hard about equity, access, and how to build public trust.


Harriet: Thank you, Gordon, I think there’s so much there to
unpack. And one point I think in particular that you’ve
mentioned, and this came out really strongly as one of our main
findings from these groups, was the way that a lifetime genome
and the way that we might deliver that information could really
impact family dynamics in ways that we might not have really
thought of before or in ways that we really have to unpack
further. And, Suzalee, I’d love to hear from you about this, how
might diverse family dynamics need to be considered?


Suzalee: Harriet, as it relates to diverse family dynamics a
burning legal issue, which is then triangulated into being
considered an ethical issue as well as a social issue, was the
question can siblings of sperm donors be informed of
life-threatening genomic discoveries? Whose responsibility is it?
Will policies now have to be changed or implemented by donor
banks to take into consideration the possibility of families
being part of the new genomes programme?


Harriet: Yeah, thank you, Suzalee. I think there’s so much there
that we have to unpack and in the Generation Study we’re starting
to look at some of those questions, but going forward into
potential risks, benefits and uses of the lifetime genome, all of
these new technologies around human reproduction are things that
we’re going to have to consider really, really carefully through
an ethical and legal lens. Suzannah, I wondered if you have
anything to add to these as major ethical issues that came out in
these groups.


Suzannah: I think, as you say, people were so fascinated by the
idea of this information landing in a family, and where do you
stop? Do you stop at your siblings, your direct family, the
brothers and sisters of a child?  Do you go to the
cousins?  Do you go to the second cousins?  It’s this
idea of where does family stop. And then people were really
interested in thinking about who does the telling, whose job is
it? And we had this fascinating conversation – I think it was in
Workshop 3 – where this very stark fact was shared, which is the
NHS doesn’t know who your mother or your father or your siblings
are; your NHS records are not linked in that way.


And so that presented people with this challenge or concern that
“Actually, if I get quite a serious genetic condition diagnosed
in my family whose job is it to share that information, what
support is there to do that and how far do we go?”  So, I
think people were really fascinated and hopeful that Genomics
England will really be at the vanguard of saying, “How do we as
we move into an era of more genetic data being used in our
healthcare, how’s that managed and how’s it shared?”


Harriet: Yeah, thank you so much, Suzannah. So I think that
what’s coming out through everything that you’re all saying is
the huge breadth of issues that came up here. And of course we’re
seeing, very encouragingly, so many nods to the potential
benefits, especially around things like pharmacogenomics, but we
are seeing some risks.  Gordon, I wondered if you’d like to
elaborate a bit further.


Gordon: So, something that came up, and it divided the group
quite considerably, carrier status divided us. Some saw it as
reducing disease prevalence and others feared it could fuel
anxiety or stigma amongst the family or other families. It showed
how personal these choices are and why families need control over
what they learn.


Harriet: Yeah, it’s a very good point, and carrier status is
something that could be a conceivable use of our lifetime genome
record. Suzannah?


Suzannah: Just building off what Gordon was talking about, I
remember there were also discussions around are we getting into a
state where this is about eradication of so many different
conditions, and actually how does that sit with a society that is
more embracing, accommodating and supportive of people with
different health needs. So, I think that was quite a big ethical
discussion that was had, is, and particularly where we think
about what we screen for in the future over time and so forth,
people really being conscious that “Actually, where are we going
with this? Are we risking demonising certain conditions and
saying we don’t want them on the planet anymore and what are the
consequences of that?”


Advert: If you’re enjoying what you’ve heard today and you’d
like to hear some more great tales from the genomics coalface,
why don’t you join us on the Road to Genome podcast, where our
host, Helen Bethell, chats to the professionals, experts and
patients involved in genomics today. In our new series, Helen
talks to a fantastic array of guests including the rapping
consultant, clinical geneticist Professor Julian Barwell about
Fragile X Syndrome, cancer genomics and the holistic approach to
his practice. A genuine mic-drop of an interview. The Road to
Genome is available wherever you get your podcasts.


Harriet: And I think came to a point in our final meeting where
we were asking our participants, so Suzalee and Gordon and
everybody else in the room, whether you might consider having a
lifetime genome for yourself and what that would look like. We’d
love to share your views about that, and Suzalee, I’m wondering
if you can share your thoughts on that with us first.


Suzalee: Definitely. I would wholeheartedly be interested in the
lifetime genome programme if it was offered to me right now. I
believe that the pros for me are phenomenal. I have come to terms
with the thought that life is unpredictable and I have already
begun to accept any health condition that comes my way. Believe
you me, I have been through the stage of denial, and yes, I have
frozen upon hearing health diagnoses in the past but now I
believe that I am a bit wiser to accept the things that I cannot
change and to prepare to face the symptoms of whatever illness I
am to be dealt with or to be dealt to me. If the analysis of my
genome can help me to prepare, then yes, I am going to welcome
this programme with open arms.


Harriet: Thank you, Suzalee. And, Gordon, how did you feel about
it?


Gordon: Being part of the group showed me how genomics is both
thrilling and daunting.  I’d lean towards ‘yes’ for a
lifetime genome resource for the chance to detect conditions
early, but I get why some people may say ‘no’ over the data fears
or ethical lines. This isn’t just a science project, it’s about
designing a future where everyone feels included and protected.
We need more voices, parents, young people, underrepresented
communities, to keep shaping it in the right direction. Laws
would have to be enacted regarding the storage, use and
availability of genetic data. We haven’t yet seen as well, how
AI’s complete benefits in medicine will develop over time.


Harriet: Thank you so much, Gordon and Suzalee, for sharing that.
And, Suzannah, I know that at the end of the Public Standing
Group we generally asked all of our participants whether they
would choose to have a lifetime genome, the same sort of question
I’ve just asked Suzalee and Gordon. I wondered if you could just
briefly give us an overall sense of how the Public Standing Group
participants felt about that.


Suzannah: Yes, so it’s interesting to see that actually not
everyone said, despite spending a year or almost a year
discussing this, not everyone said, “Sign me up,” 6 said, “No” or
“Maybe.” And the reasons they gave, this idea, “Well, all this
data, could a government sell it off?  What guarantees have
we got?”  So that was a reason. Somewhat of a concern also
about breaches but also this idea of “What do I really want to
know? Do I want to have a lifetime resource that can tell me
what’s going to happen next in my health?” and some say, “Let me
deal with it when the symptoms start coming and that’s the way I
want to handle it.”  So, yeah, about 20 said, “I’d be really
interested,” similar to Suzalee and Gordon, 6 on the fence or
firmly, “No thanks.”


Harriet: Thank you so much, Suzannah. I think your point about
uncertainty there is so relevant and important to us. We see
uncertainty across genomics and we’re layering that here with
uncertainty about futures, we’re layering that with uncertainty
about health. And I hope that this has served to really
illustrate the magnitude of the challenge we’re looking at here
and I think also why for us as Genomics England this is just
something we’re exploring. There’s so much to unpack, there’s so
much still to be done.


In terms of our next steps for Genomics England, it feels like we
could speak about this for a week but I’m going to have to wrap
it up here. So, for us what are our next steps?  We
hope really that as we publicise the findings of this Public
Standing Group and when we start combining some of our work and
looking at it in harmonisation with the work that others are
doing across the world, we might be better positioned to
understand the potential future directions that a lifetime genome
could take.


That’s obviously very, very exciting because we expect to see
this area of enquiry expanding significantly over the coming
years.  And we’re already hearing about a number of other
countries who are also doing birth cohort studies like we are who
might hope to use similar applications of the lifetime genome
going forward. So, there’s a real opportunity for us here to
collaborate and it’s really heart-warming that the voices of our
participants in this Public Standing Group can be used to
facilitate that level of engagement. For us at the Generation
Study, we’re already looking at the next iteration of our
lifetime genomes work and we’re being led by the findings of this
Public Standing Group as we move forward, specifically in that
we’re going to be starting to take some of these emerging themes
to the parents of our Generation Study babies to really find out
how they would feel about them.


Harriet: I’d like to extend my sincere gratitude to all for being
my guests today, Suzannah Kinsella, Suzalee Blair and Gordon
Bedford. Thank you so much for your time and joining me in this
discussion of the lifetime genome. If you’d like to hear more
content like this, which I am sure you would, please subscribe to
Behind the Genes on your favourite podcast app. Thank you so much
for listening. I’ve been your host, Dr Harriet Etheredge. 
This podcast was edited by Bill Griffin at Ventoux Digital and
produced by Deanna Barac for Genomics England.