Vivienne Parry, Alice Tuff-Lacey, Dalia Kasperaviciute and Kerry Leeson Bevers: What can we learn from the Generation Study?

As of February 2025, the Generation Study has recruited over
3,000 participants. In this episode of Behind the Genes, we
explore what we have learnt so far from running the study and how
it continues to evolve in response to emerging challenges.


The conversation delves into key lessons from early recruitment,
the challenges of ensuring diverse representation, and the
ethical considerations surrounding the storage of genomic data.
Our guests discuss how ongoing dialogue with communities is
helping to refine recruitment strategies, improve equity in
access, and enhance the diversity of genomic data. 


Our host Vivienne Parry, Head of Public Engagement at Genomics
England, is joined by Alice Tuff-Lacey, Program Director for the
Generation Study; Dalia Kasperaviciute, Scientific Director for
Human Genomics at Genomics England; and Kerry Leeson Bevers, CEO
of Alström Syndrome UK.


For more information on the study, visit the Generation Study
website, or see below for some of our top blogs and podcasts on
the topic:


Podcast: What do parents want to know about the Generation
Study?

Podcast: How has design research shaped the Generation Study?

Blog: What is the Generation Study?



"We always have to remember, don’t we, that if people say no to
these things, it’s not a failure to on our part, or a failure on
their part. It’s just something they’ve thought about and they
don’t want to do, and for all sorts of different reasons. And the
other reflection I have about different communities is the
‘different’ bit, is that what approach works for one community
may not work for another, and I think that that’s something
that’s going to have to evolve over length of the study, is
finding the things that are the right way, the most helpful way
to approach people."


You can download the transcript, or read it below.


 


Vivienne: Hello and welcome to Behind the
Genes.   


Alice: “And this is quite an exciting shift in how we use whole
genome sequencing, because what we are talking about is using it
in a much more preventative way. Traditionally, where we’ve been
using it is diagnostically where we know someone is sick and
they’ve got symptoms of a rare condition, and we’re looking to
see what they might have. What we’re actually talking about is
screening babies from birth using their genome, to see if they
are at risk of a particular condition, and what this means is
this raising quite a lot of complex ethical, operational, and
scientific and clinical questions.”   


Vivienne: My name’s Vivienne Parry, and I’m Head of Public
Engagement here at Genomics England, and I’m your host on this
episode of Behind the Genes.      Now, if you are
a fan of this podcast, and of course you’re a fan of this
podcast, you may have already heard us talking about the
Generation Study, the very exciting Genomics England research
project which aims to screen 100,000 newborn babies for over 200
genetic conditions using whole genome sequencing.   
  Well, we’ve got more on the study for you now. What we’re
doing to make it both accessible and equitable for all
parents-to-be, and our plans to ensure that we continue to listen
to parents, and perhaps in future, the babies as they grow up.
We’ll chat, too, about emerging challenges and how we might deal
with them.    I’m joined in our studio by Alice
Tuff-Lacey, the Programme Director for the Generation Study, and
Dalia Kasperaviciute, Scientific Director for Human Genomics,
both from Genomics England, and we’re delighted to welcome Kerry
Leeson-Bevers, Chief Executive of Alström Syndrome UK. And I’m
just going to quickly ask Kerry, just tell us about Alström
Syndrome and how you’re involved.   


Kerry: Yes, so Alström Syndrome is an ultra-rare genetic
condition. My son has the condition and that’s how I got
involved. So, the charity has been around now since 1998, so
quite a well-established charity, but as part of our work we
developed Breaking Down Barriers, which is a network of
organisations working to improving engagement and involvement
from diverse, marginalised and under-served communities as
well.   


Vivienne: And you wear another hat as well? 


Kerry: I do. So, I’m also a member of the research team working
on the process and impact evaluation for the Generation Study.
So, I’m Chair of the Patient and Public Involvement and
Engagement Advisory Group there.   


Vivienne: Well, the multiply hatted Kerry, we’re delighted to
welcome you. Thank you so much for being with us.   
  So, first of all, let’s just have a sense from Alice
Tuff-Lacey about this project. In a nutshell, what’s it all
about, Alice? 


Alice: Thanks Viv. So, I think in the last few years we’ve seen
some really big advances in the diagnoses of rare diseases
through things the Genomic Medicine Service. But we know it takes
about 5 years often to diagnose most of these rare conditions.
What we also know is that there are several hundred of them that
are treatable, and actually there can be massive benefits to the
child’s health from diagnosing and treating them earlier. I think
a really good example of this which is often talked about is
spinal muscular atrophy, which is a particular condition where
there is a genetic treatment available and there is a really big
difference in families from those babies where the condition was
identified later on, versus their brothers and sisters where they
were identified early because they knew there was a sibling that
had it and they were given that treatment.     What we
think there is a huge potential opportunity to identify these
children from their genome before they get ill, and this is quite
an exciting shift in how we use whole genome sequencing, because
what we are talking about is using it in a much more preventative
way.  But this is a really different approach to how we’ve
been using it so far, because traditionally where we have been
using it is diagnostically where we know someone is sick and
they’ve got symptoms of a rare condition and we are looking to
see what they might have, what we are actually talking about is
screening babies from birth using their genome to see if they are
at risk of a particular condition. And what this means is, this
raises quite a lot of complex ethical, operational and scientific
and clinical questions.      So the aim of the
Generation Study is really to understand if we can and should use
whole genome sequencing in this way to screen for rare conditions
in newborn babies. We’ve been funded by the Department of Health
and Social Care to do this over the following years, and the way
we’ll be doing this is by a national study across a network of
trusts in England where we are aiming to recruit about 100,000
babies and screen them for rare treatable conditions that we know
present in childhood. And really the aim of this is to understand
if this will work and how it will work, and to generate the
evidence to allow the NHS and the National Screening Committee to
decide if this could become a clinical service, and that’s very
much the primary goal of the study.      Beyond
that, however, there are some other aims of the study, and we
also consent mothers to ask permission to retain their genomic
data and to link it to the baby’s clinical data over their
childhood, and we’ll be providing access to this to researchers
in the de-identified way in our trusted research environment. And
this is to really understand if that data can also be used to
further generate information around other discovery research, but
also critically understand that the motivations for parents
involved will be very different, and we need to think very
carefully about how we engage and work with the parents of the
babies going forward about how we use their
data.   


Vivienne: And the super exciting thing is we’ve started
recruiting. How many mothers have we recruited? 


Alice: So, we’ve recruited over 3,000 to date, and it’s building
every day and every week really. And it’s really exciting because
we see more and more trusts coming online and the study building
and really starting to learn from the experience. And every week
and every month, we’re learning much more about how this process
works, what the impact it’s having, and kind of what we need to
do over the coming few months and years to deliver
it.   


Vivienne: And we did a huge about of work at Genomics England
before the study even started, to try and find out what people
wanted. So, we found out, for instance, that people didn’t want
to know about late onset conditions, they did want to know about
conditions where there was a treatment, and they wanted things
that could be done for their babies in childhood. So, we had a
really clear steer from the public about this project before we
even started. So, how are we continuing to learn from the people
who are involved in the study and the public? I mean Kerry,
you’ve been involved in this aspect. We need to listen, don’t we,
to find out what’s going on?   


Kerry: We do, we do, and I think it’s really encouraging to see
the public dialogue and the amount of engagement work that was
done there to kind of identify what some of those areas were, but
it’s really important that we don’t stop that engagement there.
It’s really important to continue that, and I know that we’ve got
quite a diverse group for our Patient and Public Involvement
Advisory Group and the Evaluation Team, and one of the things
they’re really interested in is how we’re going out there to
speak with communities. You know, we can’t just be reliant on the
media, and press releases about the study. We need to actually go
to communities and have these conversations so that people can
have a conversation within an environment that they feel safe and
confident with the people that they feel supported by as
well.   


So I think it’s really key that we continue to ask those
questions but also learning from the evaluation and, as we go
through the process, of speaking to the patient organisations as
well who support families that suffer from some conditions that
we plan to identify through this study, and learn what some of
their challenges are as well. You know, do they feel equipped to
be able to support parents that are getting a diagnosis? As well
as obviously their participants and the general public, to make
sure that we’re aware of attitudes and perceptions as the study
goes along.   


Vivienne: Because there’s always a danger with this kind of study
that it’s people who are health literate who end up being
involved. Whereas some of the people on whom the burden of rare
disease is greatest may not either feel that they can access, or
would want to access, this study. So, what are we doing there?
How are we listening to people? 


Kerry: When we are looking at recruitment as well, like you say,
you know this is a research study and when we look at history and
when we look at participants in research studies, we very rarely
do you get a diverse representation of people in these types of
studies. So, it’s really important that those extra efforts are
made really in terms of recruitment to get the right sample of
people involved. And I know at Genomics England, that they have
invested their time and money in terms of interpreters and
translating materials and things, but actually it’s the sites and
recruiting people that need to be well resourced in order to use
recruitment strategies, because if we’re just looking at posters
in waiting rooms, for instance, you’re going to get a particular
demographic of people that will respond to those kind of posters,
such as people who don’t speak English as a first language, it
would be really difficult sometimes to read those kinds of
posters and then to ask questions about that.     We
need skilled people within sites that are recruiting who have got
cultural competence who can have those conversations, address
some of those areas, some of those concerns so that we can get
that diverse representation.   


Vivienne: So, there’s a whole piece about equity of access for
everybody and Dalia, perhaps you can explain why this is so
important, scientifically as well as ethically? There’s another
piece about making sure that we get a full diversity
represented.   


Dalia: We know that some of the conditions are more common in
certain populations or certain communities. We also know that
some of the conditions are caused by certain variants in one
population but not in the others. And these genetic causes even
of the same condition can vary between different communities and
different genetic ancestors.  On the other hand, our
knowledge about the conditions and the genes, and the variants
which cause them, come a lot from what we’ve seen before. Where
we’ve seen those variants in the patients with the disease, and
importantly where we’ve seen those variants in control
populations where these individuals which don’t have
conditions.      Therefore, if we lack the
diversity in our datasets, we would not know about all the
diverse reasons of why conditions can be caused, or how it
progresses, or what it might mean for individuals. And we would
not be able to have equitable testing, or we wouldn’t know
whether the test works for everyone. If that happened, we might
be in the territory where we can’t detect or don’t detect as well
all the conditions across different individuals. But also, we may
be having more false positive results and create more anxiety for
families as well as burden for healthcare
system.   


Vivienne: So, are you saying, Dalia, that actually sometimes we
might get a false positive, or indeed a false negative, simply
because in that person, the condition which we think is usually
caused by a particular change, they’ve got a slightly different
change and so therefore we’re not picking it up. 


Dalia: Indeed, but it’s one of the possibilities. If, let’s say,
all our knowledge about certain genes came from a limited number
of individuals, seeing a new variant in another individual might
seem that it’s something really rare and never seen before and
it’s potentially changes how the gene functions, we would say;
“oh that’s maybe something which causes the disease,” when
actually it can be that it is a benign variant, just a normal
variation which is very common in another part of the world, it’s
just that we don’t have enough data to know about it. So, we need
to be aware of those risks and take it into account when we
interpret the variants.      And, we also need to
be transparent when operating in the environment. There was
historical and investment in the diversity in research and our
data sets still are not as diverse as we would like to be. It’s
shifting, the balance is definitely shifting in the last few
years. A lot of effort is being done but the only way to shift
the balance forever and make that genomic medicine work for
everyone is to really actively engage those individuals and
involve them in the research, and taking all the effort that
Kerry was talking about.   


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Vivienne: Alice, that goes back to this thing about holding the
genomic data, because you need to hold the genomic data because
the thing about genomics as always, you need to know what happens
next. So, for instance, if somebody had a negative result and
then later developed a condition, you need to be able to go back
that data in order to find out what the problem was. 


Kerry: That’s right. You know, as Dalia talked about, we know
that there is a risk within the study and we try and be clear
about that in our participant information that there are some
babies where they may have a genetic condition that we will need
not find it, and others where we might find something that
doesn’t go on to be the actual condition. And we need to kind of
monitor those in different ways.      So in
particular in the cases where, if we’ve returned a result where
we don’t think we suspect a condition and a baby goes on to
develop a condition, it’s quite complex how we monitor that, and
we’re trying to go for a multi-track approach, and I think a lot
of the benefits is some of the infrastructure that Genomic
England already has that we can utilise.  So, some of the
foundational things we’ve put into the study to help support the
approach are things like the ability to contact parents regularly
so we can actually work with them to find out over time if their
babies develop conditions.   


As you say, ability and consent to access the clinical data about
the baby so that we can then access national data sets, and then
we can then potentially monitor to see if babies seem to be
showing signs of developing a condition. And also, really
continuing to work with a network of clinical specialists where
we’ve work quite hard over the last couple of years to build that
kind of network and engage with them about the study, because
they’ll be the ones who the babies will come to if they develop
those conditions. So, they are a really good route to us finding
out, whether or not there are babies who have been part of the
study who then go on to develop a condition.     And I
think the reality is that this is a really complex process and
it’s something that even traditional screening programmes really
struggle with, and that’s why this multi-pronged approach is
really important, and why also we see that this approach will
evolve over time, and at the moment, the important thing is we’ve
worked hard to put the right foundations in to allow us to do
this type of monitoring, and to really evolve that approach as
things develop and as more things come along potentially where we
can invest in.   


Vivienne: So, it’s interesting, isn’t it, because I guess that
some parents would think that if you get a false positive or
false negative, that it means that the test is at fault. And
actually the accuracy of the test is good, but what we may have
an issue with is that there is something else causing the problem
that we don’t yet know about. So, a big part of this project is
giving much, much more information about the causes of
conditions.   


Alice: Yes, and I think that’s also why the discovery research
aspect is really important, the fact that we consent for that
ability to hold the baby’s data. So not only will we want to use
it for the evaluation, but as I mentioned at the beginning, we
have asked for parents to be able to allow us to link it to
clinical data which then allows us to track over time and find
out more information, because it’s always the quality of the
information we know that will help us in the future to identify
these conditions, so the more we can generate potential
information, you know, the more we will learn as a
society.   


And so it’s actually quite an altruistic thing we’re asking of
parents, and that’s something we recognise and that’s why it’s
also important we think about, how we continue to engage with the
parents and the baby over their lifetime to remind them that
we’re holding this data, but also to understand what their
concerns and feelings are about us holding that data and how
we’re using it for that broader research. 


Vivienne: And that’s very much what you’re involved in, isn’t it
Kerry? 


Kerry: Yes, and I think sometimes in some ways that may offer
some reassurance to parents as well, to know that’s there as a
reference point if things do develop over time, but I know that
one of the things we’re looking at as part of the evaluation, and
the PPI Group we’re involved in, is looking at the experiences of
patients through this journey because actually it will create
quite a lot of uncertainty.      As a parent of a
child with a genetic condition, that uncertainty really is one of
the hardest things to learn to live with. So at that early stage,
one of the things we’re looking at is that experience, how much
support people have received, whether that has an impact on the
parent and their child and their on bonding and their experiences
and things like that, and I think it is important that we do
that, but I think also having those references, where you’re able
to go back and ask those questions, that’s really important that
the support is in place, and that pathway really for parents to
know where to go to. Because sometimes, although we may arrange
to have calls at regular intervals and things, sometimes the
questions of parents don’t necessarily come at the time when they
are having a telephone call. They come really late at night when
there’s nobody to pick up the phone, so having as much
information as we can available, and those support structures in
place, is really key.   


Vivienne: We all start off these projects thinking that they are
going to go in a particular way, but actually there’s a lot of
flexibility in this study, isn’t there, Alice?  For
instance, we will be looking at all those false positives, false
negatives because we need to learn from that. We will be,
perhaps, changing our approach as we go on if there is something
that isn’t working out. Is that what we’re doing? 


Alice: Yes, I think what we have recognise is it is a study and
therefore that involves learning by it’s very nature, and that’s
why partly we’re working with external evaluation partners that
Kerry’s involved with, but also why we invest in a lot of things
internally. Like we do a lot of user research with our midwives
and our participants, and also potential participants. Because,
actually we don’t know the answer to this. No one’s done this
before, and so this is about all of us really learning, and
learning in the right way and continuing to do that throughout
the study, but also more importantly capturing that information
and making sure that at the end of it, we then have some
understanding of if we were to see that it’s right to deliver
this as a clinical service, what that might actually
involve.      But also, even if we get to that
point, I think beyond that we will still continue to learn over
time and that’s again why that long enduring consent is quite
important, because we can then continue to maintain that long
term evaluation and continue to maintain that long term potential
to help further further research. And so that’s the thing where
actually we’ll be learning for the next 10-15 years, really what
the Generational Study has learnt, and actually what we have
achieved through it. 


Vivienne: I just want to move back to something that you
mentioned, Kerry, about conditions that we’re looking for, and
there were a lot of very specific things. I’ve said that what
parents wanted, but there’s also some scientific things, and
Dalia might want to come in here, that these are conditions that
we pretty sure that if you’ve got the particular genetic change,
that you will get the condition – something called penetrance.
So, you know, we’re not leaving people with a lot of uncertainty.
But, how will we go about assessing new conditions as part of
this study, or are we just on the ones that we’re on at the
moment? 


Dalia: So, we started from the things we understand the best and
we know how to detect them and we know how to confirm them
because the tests that we are doing in Genomics England is a
screening test, it will not be a definitive answer whether you
have or you don’t have a condition. Anyone which will get a
positive result will be referred to an NHS specialist clinician
for further assessment. And some of those positive results turn
out not to have the conditions and some of them will have, and
they will have their treatment pathways. So, we’re started to
very cautiously, and that’s what came from public dialogue,
everyone was saying that; “you need to be really cautious, we
need to see that it works for the conditions that we understand
well”.     But as a starting point, as we learn more,
we’re learning of how could we expand that list.  What would
be acceptable for public. Maybe some conditions will have an
experimental treatment, which currently would not be included in
screening but as treatments evolve, at some stages maybe there
will be opportunities to include some conditions in the
future.      As our science evolves, we keep
assessing the new conditions and seeing can we include them,
would it be acceptable to parents, would it be acceptable to the
healthcare system, and one of the things about screening it’s
really important not to cause harm. There are a lot of benefits
in screening but if we didn’t do it cautiously, it also has some
risks, and we need to be very careful about it.   


Vivienne: Now Kerry, there are lots of parent groups who will
come along to us and say; “oh you must include this condition,”
but perhaps there isn’t yet a treatment, or there isn’t a pathway
in the NHS that will help people get what they need. And I guess
if we try to include too many conditions, we would actually
undermine trust.   


Kerry: So, the patient organisation, our condition, Alström
Syndrome, isn’t included in the list. For our condition, there is
no specific treatment although we do have a highly specialised
service, and it is very important to get early diagnosis because
children can develop heart failure and there are symptom-specific
treatments available there. But I get the reasoning why there
needs to be a specific treatment and the need to include just a
smaller group at the beginning, but our hope as with I’m sure a
lot of other patient organisations, is that our condition will be
added at a later time if it is found that this is something that
would be acceptable in routine care.   


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Vivienne: Let me move on to another aspect of this study. These
are babies, and we are holding their genomic information but at
16, they will be able to decide whether they want us to continue
holding their genomic information. Alice, is that very much part
of this programme to think about what we’re going to say and how
we’re going to engage those 16-year-olds? 


Alice: Yes, it very much is. What I always say, because I get
asked this question a lot, is that I don’t think we can pre-judge
what that looks like. Because I look at my children, and
certainly their lives are very different from my childhood, and I
don’t think we can imagine exactly what our babies will look in
16 years and what that world looks like. I think the important
thing is many of things we are trying to do is that we lay the
right foundations in place, and part of that is ensuring that we
continue to think about how we engage with young people as the
study evolves and over time, so that we understand what the world
is looking like from their perspective.      But
also, how do we equip the parents to talk about the fact that
these babies are part of the study to them? What does that look
like? How can we support them? And that’s very much something we
want to be looking at in the next year, really working with
parents from the Generation Study to understand how best we can
do that so that they can have some of that conversation for
themselves as well. I think we can’t pre-judge exactly how we
need to talk about them and also not think it’s just one thing.
We need to evolve and work with the children as they grow up, and
work with their parents to equip them because, as I said, we
don’t really know how they’re going to access information in the
future. You know certainly TikTok didn’t exist when I was a
child, and so that’s what we’ve got to think about is what’s the
best avenues or forums to really engage properly with them as
they grow. 


Vivienne: Kerry, what other concerns to parents have that we’re
learning now?   


Kerry: I think the concern is that when treatments are being
developed, that they are not necessarily being developed for the
whole population. They’re often being developed for sub-sets of
population because we don’t have a complete dataset. And when you
think about people being involved in research, people feel that
they are being left behind because their data is not necessarily
represented within there, it doesn’t reflect their community, and
it’s not being discussed within communities, the different
research opportunities and things have been available, I think
it’s the fact that we’re not investing enough in community
engagement and dialogue to explain more about
genetics.  


I think technology has advanced at pace. As a parent of a child
with a genetic condition, that is very encouraging to see that,
but I think sometimes the support and the information is not
necessarily keeping up, so we’re not having those open
conversations really about genetics and genomics, and I think
that’s one of the things I hope that this study will really lead
to, that it will now become much more part of everyday
conversation.  


Because often, when you have a child with a genetic condition,
you first hear about a condition, the way you take in that
information and ask questions is very different than having a
conversation with the general public about genetics. When you’re
concerned that your child may have a condition or you may have a
condition yourself, you’re in a completely different mindset. So,
the hope is that that dialogue will open so that people will be
able to ask questions to learn more about the projects and things
that are out there and available so that people are included and
can take part in research if they want to. But it’s important to
remember that not everybody will want to. It’s about being given
informed choices and to do that we need to make sure that the
support and the information is appropriate, inclusive and
accessible.   


Vivienne: We always have to remember, don’t we, that if people
say no to these things, it’s not a failure to on our part, or a
failure on their part. It’s just something they’ve thought about
and they don’t want to do, and for all sorts of different
reasons. And the other reflection I have about different
communities is the ‘different’ bit, is that what approach works
for one community may not work for another, and I think that
that’s something that’s going to have to evolve over length of
the study, is finding the things that are the right way, the most
helpful way to approach people.  


Kerry: I completely agree. I think it’s like you say, if people
say no, that is completely their right to do so as long as
they’re saying no when they’ve been given the information to be
able to really take that on board, think through, consider it and
then make an informed decision. I think often people say no
because they’ve not been given the right information to be able
to understand what is expected, so they’ve not necessarily been
given the opportunity. And I think we all want good outcomes for
everybody. That doesn’t mean delivering the services in the same
way. Sometimes we need to deliver services in different ways
because often services aren’t very accessible for some
communities to be able to access. So sometimes we need to make
changes, adapt, to make sure that everybody has the same
opportunities to the same outcomes. 


Vivienne: We are constantly re-evaluating, rethinking,
re-engaging to try and make it the best we can. Whether it’s with
different communities and different approaches. Whether it’s with
constantly assessing people who’ve had false positives, false
negatives and finding out why that is the case. And in the
future, I think this will have some really major effect. 
Dalia, you’re the scientist amongst us today. Tell us what you’re
hoping for from this study in science terms. 


Dalia: So, first of all, we want to find the babies which we can
treat before we develop symptoms, before we get ill, so that we
can have more fulfilling lives. That’s the bottom line. But we’re
doing that, we also will learn about the conditions. We’ll learn
a lot about the natural history of the conditions. What happens
when you detect it before baby gets ill, then you start
treatment, and how does it work in the diverse communities and
diverse populations that we’ve talked about. Are there are any
differences based on people’s ancestry, but not just ancestry,
about their lifestyle, about anything else which can affect how
disease develops, or how the care or treatment goes.   
  So, that’s kind of the bottom line. The top line and now
our ultimate aim, probably many years from now, would be that we
can detect variants of genes or conditions before they develop,
and we can create treatments for them before our children get
their conditions.  That’s something that the science
community is very excited about. I think we’re quite a few years
from that, but that’s where we hope all this will be heading in
the future.   


Vivienne: It’s really becoming a possibility, but the science is
only the first part of it. It’s the human interaction. It’s the
how it lands with people. It’s how they feel about it. It’s how
they trust it. And these are all the things that we’re really
working on at Genomics England to make this study not just a
scientific success, not just a success for the NHS, but also
something that is really meaningful and important and valuable
and trusted for people having babies. Would you agree? 


Alice: Yes, 100%. I think, just to come in there, Viv, I think
we’ve talked a bit about the importance of public trust and being
the foundations of what we do, and I think that’s something that
Genomics England’s always held true to itself, but I think for
the purpose of the Generation Study, it’s been one of kind of the
foundational principles from the beginning, and I think Kerry and
you have touched upon some really important themes today about
how it’s not a ‘one size fits all’ approach. And I think very
much that piece that we touched on a bit about, kind of, how do
we make this accessible to everybody, we see it very much as not
a ‘one size fits all’, and so we’ve been trying lots of different
things to really tackle that, and evolving the approaches which,
as you said, that’s where the flexibility comes in.   
  My hope for the next 12 months is that we can really, now
that we’ve got the study up and running, work a lot with the some
of the regional networks, the Genomic Medicine Service alliances
who are working at the regional level, and the recruiting trusts,
to really explore different approaches and work out how we can
support them to engage with the communities in their areas,
because they’re the ones who will understand who they are, and
our role is to really try and provide, as Kerry highlighted, the
tools of support to allow them to do that, and to try and make
sure that we can make this as equitable as possible in terms of
people being able to at least understand the studies here, get
the information in the appropriate way, and then as we have also
talked about, making their own minds up about whether this is the
right thing for them to be part of.   


Vivienne: So, the final question for you all is if I’m a
mother-to-be, where can I find out more information. Let’s start
with you, Kerry. 


Kerry: Well, from the Generation Study website, there’s
information there. Midwives, GP practices, obviously they’re
often going to be your first port of call, so I’m hoping that
they feel equipped to be able to answer those questions and to
signpost people to one of the trusts that are
involved.   


Vivienne: And we’ve also got a Genomics 101 episode where we
answer some of the frequently asked questions, and I think there
are at least 2 or if not 3 separate episodes from Behind the
Genes, which people can look for which look at different aspects
of the project. Anything else, Alice, that we need to know? 


Alice: So, Kerry highlighted it, the Generation Study website is
a really good starting point, but that’s a good place to also
find out what trusts are involved because it’s also important to
know that this is not available in all trusts in England at the
moment. We have a network and it’s growing, and it is all around
England, but the first place to start is, kind of, is it in your
local trust?  And then from there, it’s then engaging with
your trust and hospitals where there will be information, and the
midwives are prepared to kind of talk to people.  So those
are, kind of, the good first places to start.   


Vivienne: Well, we’re going to wrap up there. It’s been so good
talking to you all. So, thank you to our guests Alice Tuff-Lacey,
Kerry Leeson-Bevers, and Dalia Kasperaviciute for joining me as
we talked through how the Generation Study is continuing to
evolve as it responds to emerging challenges.


Now, if you would like to hear more about this, then please
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of course, we hope that you would like to rate this. 
Because, if you rate it, it allows more people to see it and more
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It’s available through your normal podcast apps. I’ve been your
host, Vivienne Parry. The podcast was edited by Bill Griffin at
Ventoux Digital, and produced by Naimah Callachand at Genomics
England.


Thank you so much for listening. Bye for now.