Aman Ali, Anna Smith, Moestak Hussein and Naimah Callachand: How can we bridge the gap between diverse communities?

In this episode of Behind the Genes, we explore the challenges
diverse communities face in accessing genomic medicine. The
discussion focuses on issues including language barriers,
cultural differences, and socioeconomic disparities that hinder
marginalised communities from accessing and benefitting from
genomic medicine.


Our guests delve into successful strategies for engaging these
communities in healthcare research and decision-making,
highlighting the importance of building trust with groups that
have historically been underserved or mistreated. The episode
also emphasises the need for culturally sensitive communication
from healthcare professionals and how meaningful community
engagement can foster collaboration and trust within genomic
research.


Our host, Naimah Callachand is joined by Aman Ali, a Community
Ambassador at Genomics England and Community Engagement Manager
at Our Future Health, Anna Smith, Child and Adolescent
Integrative Psychotherapist at Rareminds, and Moestak Hussein who
works for Bristol City Council in Public Health &
Communities, working directly to build and imbed cohesion,
inclusion and social justice approaches in her role.


 


"If we talk about co-production, true co-production is really
creating a power balance where there’s no hierarchy. It’s an
empowering model. It empowers both the researchers or the person
that comes in, but also the communities that participate, and you
all start on the same level, on the same outcomes and the same
goals and aims that you want to achieve."


 


You can download the transcript or read it below.


Naimah: Welcome to Behind the Genes. 


Aman: It’s really important to engage community leaders who are
really well embedded within the communities, who are attached to
organisations or institutions which are well trusted in the
community as well, so that we can get a wider perspective of how
communities feel about genomic medicine and accessing services
that we want people to engage with. 


Naimah: My name is Naimah Callachand and I’m Head of Product
Engagement and Growth at Genomics England. On today’s episode,
I’m going to be joined by Anna Smith, child and adolescent
integrative psychotherapist for Rare Minds, Aman Ali, a community
ambassador for Genomics England, and Moestak Hussein, community
coordinator at Bristol City Council. Today, we’ll be discussing
the disparities in access to genomic medicine amongst diverse
communities. If you enjoy today’s episode, we’d love your
support. Please like, share and rate us on wherever you listen to
your podcasts. 


Aman: Hi, my name’s Aman Ali, I am an ambassador at Genomics
England, a person very passionate about health research and
ensuring that diverse communities are involved in health
research, and I work as a community engagement manager at Our
Future Health. 


Anna: My name’s Anna Smith, I’m a psychotherapist. I work in
private practice and also with Rare Minds, who are a company who
provide therapy to people with rare and genetic conditions. 


Moestak: Hi, my name is Moestak Hussein and I have a background
in community development, and I’m passionate about tackling
health inequalities, and building social justice and inclusive
approaches to address health inequalities. I work at Bristol City
Council in the public health team, and I’ve participated in the
Bristol workshops around equity in research in genomics. 


Naimah: So, let’s jump in and first of all I want to talk about
barriers to access for diverse communities. I want to talk about
how there are language barriers, cultural differences and
socioeconomic factors that impact access to genomic medicine for
marginalised communities. Anna, I wonder if you maybe could talk
to me a bit about this. 


Anna: Yeah. So, I’m talking about the traveller community, and we
refer to this community as a GRT community, which is Gypsy,
Romany and Traveller, so it encompasses people in the UK, people
living in Ireland as well. And some of the barriers to accessing
healthcare are a lack of understanding of culture. There’s been
studies done where it says that people from GRT communities show
up lower on all markers for poor healthcare and poor mental
healthcare, and part of the reason for that is things like
illiteracy. You know, you’re dealing with people who can’t read
or write. They can’t read appointment times. They don’t have
access to public transport. A lot of women don’t drive in this
community, and also women are not very well supported within the
community by the people who can drive and who can get them
places, because it’s not seen as something that they need access
to. Because the community is so closed, everything sort of takes
place within the community.  


In terms of genomic healthcare, access right from the start of
life, if people are not accessing healthcare right from birth,
they’re not getting the genetic testing that’s needed, so then a
lot of these things don’t even show up until the illness presents
itself, and then accessing healthcare from there is really
difficult. You know, it’s something that – it doesn’t happen a
lot. Only 67 percent of people from the GRT community were able
to get a doctor’s appointment when they needed it, compared to
nearly 90 percent from other communities, and that’s through
things like not having a fixed address. Lots of GPs don’t offer
temporary registration, which means that if you are travelling,
you do not have access to a GP, which is your first port of call
if you need any access to healthcare. So, many people from the
GRT communities are using A&E services in order to get
healthcare, which – you know, they are not set up for dealing
with long-term life changing conditions. They’re there to deal
with what’s right in front of them and then they move on. There’s
no sort of continuity of care. 


Naimah: Thanks Anna, that’s really highlighted a lot of barriers
for the GRT community. And I wonder, Aman, if you want to come in
now and maybe discuss some of the barriers that maybe the Muslim
community might experience. 


Aman: Yeah, I think anyone involved in medicine or anyone who’s a
doctor is really well respected in the Muslim community. That
profession is something that every parent aspires for their
children to get involved in. They at least want one of their
children to be a doctor. Having said that, there’s this
willingness to engage with the space, but there’s a lack of
knowledge, which is a huge issue here. People don’t know what the
word genomics means or genes, or understand DNA. Some of this
language is a huge barrier to understanding and then eventually
accessing some of the services that could be available to people
from Muslim communities. Because when we speak about Muslim
communities, we’re talking about a huge, diverse group of people
from South Asia, from North Africa, from the Middle East, and
they all have their nuances and different cultural experiences as
well. 


Just to kind of point out maybe one or two, most people in the UK
have grown up in the UK, where access to healthcare is free,
whereas this is quite a strange phenomenon for people who may
have not been born in the UK and then access healthcare services
in the UK. And the context being here is usually they pay for
healthcare in other countries, and whenever any public or free
healthcare is provided, it’s usually seen as kind of not very
good or suboptimum, or yeah, it’s not going to be very helpful
for us. So, when they see free healthcare in the UK, there’s that
kind of apprehension, “Actually, is this going to be worthwhile?
I’m not paying for this, so it’s not going to be very much good
for me.” So, those are some of the cultural nuances that certain
communities where healthcare is not for free in certain countries
that poses a barrier. 


Language in terms of speaking and reading is an issue. So, a lot
of people, they may speak a language, but they don’t know how to
read a language. So, even when services are translated – I, for
example, can speak Bangla, but I can’t read or write Bangla, and
not a word of Bangla at all. So for my parents, who can speak
Bangla very well, their reading level is actually quite good, but
I know that many within the community, they didn’t get education
back home, and therefore reading and writing is a challenge as
well. And then you have the issue of dialects. There’s so many
dialects within so many different communities, so when a language
is spoken or written in a particular way, if that dialect isn’t
your mother tongue or a dialect that you’re familiar with, then
that causes challenges to access as well. 


Naimah: Moestak, how do cultural beliefs and values influence
attitudes towards genomic medicine within each of these different
cultural communities? 


Moestak: I think Aman and Anna touched on it a lot, and it’s
about communities being able to coproduce that historically
hasn’t been there. The supremacy of certain communities to have a
voice and be able to express how they would like to shape their
healthcare, but also access to healthcare barriers have been part
of having a barrier in access. And I think Aman touched on like
even the term genomics, I don’t think it exists in particularly
my community. I come from the Somali community, and I’ve tried to
look at historical kind of words and terms. I mean, our language
only got developed in 1973, the written language, so you can
imagine that there’s a lot of gaps or there’s other
terminologies. 


So, the cultural beliefs and values is also communities’
recognition to be driving their own health needs and priorities
is not valued within those sectors such as healthcare. I mean,
we’re still talking about holistic medicine. People go to their
faith leaders in the first instance to have support around
prayer. That’s not necessarily recognised by mainstream health
provision. And I think it’s about how do we build on those
strengths and how do we recognise that that is a really great
part of communities. And it’s also tradition and customs within
childbirth, from birth, understanding what children and young
people and families will need. I know there’s customs and
traditions for women to stay at home, for example, for 40 days,
and those are the kind of traditions that could be built on. And
I think it’s about making sure that the child doesn’t pick up
bacteria or things like that.  


So, there is an understanding and knowledge within communities of
genomics. It’s the awareness and the training around patient
centred approaches are still missing, in my opinion. And I think
that influences how people view genomic medicine. It goes back to
the lack of trust and historic past abuses and cases, that
communities has resulted in lower participation and a reluctancy
to be part of genomic testing, but also that lack of
understanding. 


Naimah: Anna, did you have something you wanted to add in
there? 


Anna: What you were just saying about keeping it within the
community, that’s something that we see with the GRT community
massively is everything is handled within the family, and I think
that’s not necessarily valued outside of that community. If you
arrange an appointment with someone and the whole family turns
up, it’s like, “Woah, what’s going on here? You know, how is this
managed?” And it becomes a safeguarding issue, when actually that
is how it's managed, and very often you need to get the whole
family on board before you can start working with an individual.
Because within the GRT communities, individuals do not exist
outside of their families. Even what we’re saying about language,
a lot of the GRT community who live in England now speak English,
but the words that they use for mental health are very
different.  


You talk about mental ill health, that translates as psychosis in
the GRT community, whereas if you’re talking about depression and
anxiety, somebody might say that they’ve got bad nerves. So, if
you come up and say, “We’re dealing with mental health now,”
people would say, “Well, I don’t have psychosis, I don’t have
that, this is not an issue for me.” And it’s like you’re speaking
different languages even though you’re using the same
words. 


Naimah: From what all of you have said as well, it does sound
like there are a lot of similarities in the barriers in each of
the different cultural communities. 


I wanted to move on to ask about what strategies have been
effective at engaging these diverse communities in healthcare
research and decision making processes. 


Aman: There are a number of ways I’ve seen best practice take
place in regards to kind of community engagement. The approaches
have been one of two approaches. One, either inviting the
community to come to your spaces, i.e. organising events or
having opportunities where people can engage with your service.
Or the alternative approach, which I think is actually more
effective, is actually going to the spaces where communities are
most familiar with. So, whether that’s holding a focus group at a
community centre, at a church or at a mosque, or engaging in
coproduction with a community organisation, to come together, to
come up with an idea of how to best engage communities. And I
also feel like there’s a difference between PPI, patient and
public involvement, versus community engagement.  


And those are the two major approaches that I’ve seen when it
comes to community engagement, and I’m a big advocate of
community engagement, because you’re going into spaces which are
authentic to the very communities that we are hoping to engage,
but you’re going into an unfamiliar environment as opposed to
bringing that community into an unfamiliar environment, where
they might be a bit guarded with what they want to share and how
comfortable they feel. So, those are some reflections on good
practices in community engagement. 


And I think one of the key things that we need to do is
understand who are the key community leaders within that
community, ‘cos it’s one thing being within that community, and
being able to speak about that community are two different things
altogether. So just to articulate what I mean by that, I live in
Luton, but I’ve just moved to Luton two months ago, so if you ask
me about what life is like in Luton, I’ll be able to speak about
my experience, but if I was to live here for 20, 30 years then
I’d be in a better position to speak about how people in Luton
live and what their experiences are like, and that’s two
different perspectives you’re going to get. So, it’s really
important to engage community leaders who are really well
embedded within the communities, who are attached to
organisations or institutions which are well trusted in the
community as well, so that we can get a wider perspective of how
communities feel about genomic medicine and accessing services
that we want people to engage with. 


 


Naimah: Thanks Aman. I think you made a couple of really good
points there, and I think you kind of have this overarching
feeling of building trust, which is what Moestak mentioned in the
previous question as well. I thought maybe now would be a good
time to discuss your first responders project, Aman, if you could
tell us a bit about that. It’d be good to hear the kind of
developments from that community work. 


Aman: Yeah, so one of the ideas that came about from engagement
actually that we had with some community leaders within the
Muslim community, primarily some imams, they heard about the work
of Genomics England, they heard about the work of research in
particular, and they were really keen to get involved even
further, but they were honest in saying that, “I know very little
about this space. And it’s one thing for me not to know much, but
then if I don’t know anything then I’m not able to then advocate
for this within the community. So, two things you need to help me
with. One, help me understand this space, but also allow me to
then be able to advocate for services or information that my
community can benefit from.” 


So, that’s where the inception of this first responders idea came
about. The idea being that community engagement happened with
some imams from all across the country, where we trained them to
understand a bit more about genomics, and genomic healthcare and
medicine, but also to be able to navigate a number of scenarios
that they may face in the community. For example, there’s a
mother who has been recommended by their GP to go see a genetic
counsellor, but they’re really worried about broaching that
conversation with their husband or their family, because of the
challenges that they may face. So, how would you support someone
in the community when that scenario comes up? Or for example,
someone like Genomics England or Our Future Health or another
organisation has approached you about a research study, and they
want to engage your community, how would you have that
conversation with that particular organisation, advocate for
those health programmes within your community? 


So, we just presented a number of scenarios. But I think the main
thing that we ended with was giving the imams in this particular
incident the ability to signpost to services, be it helplines
that are available for communities to access more information, or
websites that people can access in order to understand more
information about different issues to do with health conditions,
or whether it be better understanding issues like cousin
marriages or kind of accessing genetic testing. 


Naimah: That sounds like you’re empowering the leaders to
advocate for healthcare and share this with their communities
through this work. I wonder, Anna, is that something that you
could do in the GRT community as well, like empower the leaders
of the family to disseminate these healthcare messages, and how
would we do that? 


Anna: Yeah, I think so. I think a lot of it would need to be
outreach, and there are people out there who can help bridge that
gap. For example, there’s a great team called Family Friends
& Travellers, and if you get in contact with them and let
them know which community you’d like to go into, they can help
arrange, or they will come with you to go into that community.
Because the GRT community, you know, is very mistrustful of
anyone coming in, and rightly so. It was only in 2011 that they
were included on the national census as an option to say you’re
from that community, so I think there’s massive mistrust there of
anyone coming into the community. 


So, if you want to engage the leaders of the families or of the
communities, you’re going into a settled traveller site, there
will usually be somebody who is in charge of that site, not
officially, but maybe their family might be the biggest family or
they might be the most important family. And there are people out
there who will allow you to start to engage with that person, who
can then disseminate the information. But it needs to be outreach
care, and the information that you disseminate, it needs to be
tailored to people who have left school at primary age, who don’t
have the skills to read or write, or to manage appointments or
read prescriptions, or have access to that type of healthcare.
That’s where it really needs to be tailored. 


And I think confidentiality as well needs to be tailored a lot,
because gossip and reputation and shame is huge in the GRT
community, and if you are seen to be engaging with someone
outside of the community, that is something that can bring a lot
of shame to you and your family, so it needs to be handled
really, really carefully. 


Naimah: Just to kind of go along with this theme of trust that
you’ve all now mentioned, Moestak, I wonder if you could maybe
comment on what strategies can healthcare organisations and
researchers employ to build trust with these communities who have
historically been underserved or mistreated? 


Moestak: Yeah, I think I mentioned earlier about the hierarchy of
power around superiority and also mistrust of medical
professional generally, and I touched there on how safeguarding
concerns are triggered on not understanding cultural norms and
practices within communities, and misconstruing that with
safeguarding. There is generally that mistrust is there. And I
think what Aman touched on there is really the importance of
asset based approaches, and really building on transparent and
really embedding transparent and inclusive practices from the
onset. I mean, if we talk about coproduction, true coproduction
is really creating a power balance where there’s no hierarchy.
It’s an empowering model. It empowers both the researchers or the
person that comes in, but also the communities that participate,
and you all start on the same level, on the same outcomes and the
same goals and aims that you want to achieve. 


And I think it’s important to embed those kind of approaches, and
it’s Covid-19 – I mean, we took part in Bristol in King’s Fund
research around the community champions model. It’s exactly that,
about engagement, about community driving their own solutions,
and being able to collectively collaborate, drive their health
piece forward, but also increase the capacity of communities. We
worked with clinicians who come from those communities, and it’s
no surprise that the uptake of covid-19 vaccine increased as a
result of working with those trusted voices.  


Quite often, those really effective programmes and engagement
often are not funded adequately. They’re not sustained. And what
happens is that we constantly are having to rebuild and restart,
and that really does affect trust as well with communities. And
when something works, why not build on it? And even now with that
Covid-19 learning from the community champion model, the resource
is not there anymore. It’s not valued anymore, sadly. That in
itself is a risk, I think, in building the trust, but also the
strength to continue that work and adapt in other ways around
genomic medicine, and even increasing and diversifying the
genomics data pool, helping communities understand and drive
that. And that first responders project, communities being
trained to capacity build and then being able to drive that
within their communities, that’s the only way that we’re going to
have effective strategies. 


Aman: I think adding onto what’s been mentioned, with regards to
building trust, it’s really important to understand the
motivations of communities, and to understand what messaging is
going to resonate with different communities, and it’s going to
be a different message for each community. You can’t have the
same approach for all communities. A recurrent theme that I’ve
come across when engaging different communities is this
difference between messaging which is individualistic and then
messaging which is about the community and more the collective
message, and how that resonates a lot more with certain
communities that I’ve engaged with, particularly within Muslim
communities. And that’s something that I think is a bit untapped
in regards to kind of any materials that are created, be it
posters or videos or any content looking to reach out to
communities. 


When we did some focus groups with some communities in Watford,
who are primarily from the Pakistani community but also other
parts of Asia in that region, the biggest response or biggest
positive response that we got was when we posed the question, “If
you were to know that people who look like you, from wherever
your parents are, family may be from, would you be motivated to
take part in that research?” And the biggest yes came on the back
of that question. And that speaks to the fact that, “If I know
that my family or my community, not just in the UK but abroad can
benefit, then that would really motivate me and build trust that
actually you’re not just here to benefit me as an individual, but
you’re here to benefit my community as a whole, and therefore,
yes, I’m going to be more trusting of this programme and be more
motivated to take part.” 


Naimah: I just wanted to go briefly back, Moestak, you mentioned
cultural norms, and I wanted to talk about the cultural norm in
societies where maybe people may marry someone from the same
ancestor, and what the societal fallout from these practices
might be. 


Moestak: The stigma and the stereotypes often for communities
comes from those beliefs and messages that are often sometimes
not even backed up with scientific evidence. It can be seen as
Islamophobic sometimes of Muslim communities that practice that.
But also I think what’s important to understand is that concept
around hereditary conditions and how that can determine one’s
health, and it’s not really fully appreciated or desired. And so
as a result, for example, a lot of people refuse to even have
those early onset maternal testing for the foetus. My personal
experience, I have three children, teenagers now, and I refused
those tests as well, because my belief and my religious beliefs
would kind of not align with being able to terminate a foetus if
there were some genetic conditions. And so I think that is often
not understood and made very clear to communities, and build on
their beliefs and attitudes and values. And so those are the kind
of cultural norms that are not fully understood. 


But also the opposite side of that actually around being able to
prevent a good life for somebody or a bad life for somebody, and
being able to prevent genetic conditions is also part of the
religion on the flipside, but again it’s not creating that link.
That cultural beliefs is not understood. I think also the
community implications around the stigma. I mean, autism’s a big
issue in the Samali community, and I remember years ago when I
was working in education, we had a big issue around even
acknowledgement of diagnosis and referrals, and it’s because of
the stigma. Those perceptions do exist within communities that if
someone has a genetic condition or ill health or a disease, it’s
almost like being a black sheep in the community. And so it’s
being able to build on those desires of the community wanting to
be healthy and well, I think is not often understood. 


Naimah: And do you think it’s partly as well education of
healthcare professionals to communicate in a really culturally
sensitive way? 


Moestak: Yes, exactly, that’s exactly what it is. It’s missed
opportunities really that we can build on. In that particular
example of autism within the community, I was able to do a really
positive piece of work with the community, and building on their
interest and their skills, but using my own lived experience and
understanding and knowledge, and being able to inform that within
education sector but also the health sector, and providing that
training and upskilling. And there is unfortunately a lack of
diversity within the workforce if you look at the NHS. The lower
level kind of cleaning and porter staff are ethnic minorities.
And so it is about using those clinicians, as I mentioned
earlier, that are coming from those communities are the
forefront. 


We’ve recently had a really positive piece of work in Bristol
around let’s talk about MMR, and we had a cohort of unvaccinated
community, a Somali community, young people between the age of 16
to 25, and we worked with a Somali clinician, who led on that
piece of work, and it was absolutely amazing. The young people as
a result trusted her information and took up – but again also
another thing that’s important is that a lot of data in the
medical system is missing. I for one migrated here from the
Netherlands, where I came there as a refugee at the age of three
years old. My medical history is completely missing in both the
UK records but also in the Netherlands, so I didn’t know if I had
MMR vaccine. So, it’s a lot of gaps in information that people
have, newly arrived communities that still need to constantly be
updated and informed and education awareness raised with those
communities. 


Naimah: Anna, I wonder if you wanted to add anything onto that
point. 


Anna: It’s really difficult with that mistrust and sort of how
closed the GRT community is to getting that information in, and I
think to getting that information understood as well and to make
it seem like it’s important. Because family is the most important
thing, people are accepted the way that they are. You know, if
we’re talking about autism, people are accepted the way that they
are, and it is a bit like, you know, “There’s nothing wrong with
my child, how dare you suggest that there is?” That testing isn’t
done because the access to healthcare is so difficult, because
people can’t register with GPs, because they can’t access
maternity care, they can’t access postnatal care. Because they
can’t register with the GP, they’re not on the system, and then
the records don’t exist. Still now there’s birth records and
death records that do not exist for these people within the
communities, never mind medical history throughout their
lives. 


Naimah: I think it really highlights a lot of gaps, doesn’t it?
Aman, do you want to add anything to that question? 


Anna: Your opening remarks is that it’s a cultural norm in all
societies, and we see even within the royal family in the UK,
that it seems to be that any disparaging comments are targeted
towards certain communities, and even then unfairly. I mean,
often it’s associated with Muslim communities, but I would say
the majority of Muslim communities don’t practice marrying
someone from within the same ancestor. It’s certain cultural
communities who do practice this. Having said that, even that
practice shouldn’t be seen in a disparaging way, because it’s how
those communities live their lives, and so we should be
respectful of that and not speak in any way disparaging towards
that community. And I think we have responsibility – ‘cos
obviously nationally the conversation then moves onto increased
risks of genetic disorders, and so we should be very matter of
fact about what the percentage increase is when it comes to the
likelihood of genetic disorders within families who marry with
the same ancestor.  


Because what happens is, if we’re not very clear with what the
actual facts are with regards to the increased risk of genetic
order then even within the community which practices marrying
someone from the same ancestor, that figure can be inflated, and
so this perpetuates fear and perpetuates the stigma even more.
Whereas if we are just matter of fact, “This is the increased
risk of genetic disorders,” and leave it there, then the
communities can decide and they’ll have a more informed position.
I think the figures are an increase from two to six percent
increase, but if you were to ask people within the community,
“What’s the increase of genetic disorders if you’re marrying
someone from the same ancestor?” they might think it’s 40 percent
or 50 percent or a really high figure. So, that’s something that
we need to work towards better understanding, which will lead to
removal of that stigma as well. 


Anna: Again, that’s something that we see in the GRT community as
well, there’s been research done by a woman called Sally Anne
Lynch into cousin marriage within the Irish travelling community,
and when they tested people, they found more than 90 genetic
conditions that are present within people’s DNA within that
community that just aren’t tested at birth. And I think, you
know, you’re right, it’s something that is not talked about,
because outside of these communities it’s seen as wrong and it’s
not seen as something that’s normal. It’s seen as abnormal. But
within this community, it is very normal and it’s very accepted.
But then the testing isn’t done because of the access to
healthcare. 


Naimah: I think it just seems like it does kind of boil down to
education and educating healthcare professionals that it is kind
of normal practices. Aman, did you want to add something
else? 


Aman: Yeah, Anna made a really good point about testing. I think
there’s something that is a gap in the service that we probably
don’t provide more widely is that, when it comes to people who
practice marriage within the same ancestor in other countries,
testing is very normal. So, I know there’s many countries around
the world where it’s very standard practice and even a
requirement in certain countries that you must be tested before
you get married, and so maybe that’s something that we can learn
from in the UK. 


Moestak: I think it’s important to understand that some
communities, decision making of consent is sometimes done by the
head of the family, and I think that that is not fully understood
as well, and often can be a barrier to participation. And I think
that there’s an element of empowerness that is needed,
particularly around women that need that empowerment model around
consent of decision making around their testing and genetic
testing, and just medical consent. 


Naimah: That’s an excellent point as well, thanks Moestak. 


So, I know we’ve touched on aspects of this already, but I wanted
to finish on this question, how can meaningful community
engagement foster trust and collaboration in genomic research and
healthcare initiatives? 


Aman: I think one of the things that I would really improve is
just awareness around genomic healthcare and genomics in general.
It’s a learning curve that’s going to happen within communities
at different rates, and we need to be mindful of this because
that rate will determine also health inequities that are
experienced by those communities as well. So, we need to make
sure that we are adequately approaching all communities to the
best of our abilities. Having said that, target maybe more
resourcing and educational opportunities for communities which
have been underrepresented in health research and in genomic
health research as well primarily, so we need to sort of
prioritise certain communities in regards to our community
outreach, because then we’ll dispel any myths that people might
have and work towards chipping away at the mistrust that certain
communities may feel towards just healthcare in general, but more
particularly about genomic healthcare, ‘cos genomic healthcare
brings up some unique challenges and some unique perspectives
within communities. 


So, there’s a number of fears about the future, but also
misgivings about healthcare in the past as well that we need to
acknowledge. So, by having community engagement initiatives,
which are prioritised from the beginning and not just an
afterthought, we can go a long way towards getting over some of
the challenges of the past, but also not making new challenges
for us in the future.  


Anna: I think as a whole, the UK has got a long way to go with
building trust with the GRT community. I think it’s going to take
some time. They still are one of the most marginalised
communities. For example, in the area that I live, there was a
GRT funeral going on a few weeks ago, and all the pub shut
because they didn’t want GRT communities in their establishments,
and there is no other community or minority that that would
happen with now. So, I think there is still quite a long way to
go to gain the trust of the GRT community. And in terms of
healthcare, I think we need to go right back to the start and
learn about these communities, and understand their cultures and
their practices, and how they work without that judgement. Living
a nomadic lifestyle is still criminalised. There needs to be a
decriminalisation around these communities before we can even
start to begin to work out how to go there and allow them to
access healthcare and knowledge and information around genetic
conditions, and around health and mental health.  


It’s going to be a very long road from here, but I think what we
can start doing is to start that destigmatisation. If you are a
doctor and somebody turns up in your surgery identifying as
someone from the GRT community, understanding the background they
come from, and not having all those prejudices, you know, which
is very difficult to do, to get rid of those thoughts that you
already have about someone. I think we need to make a real effort
to start, and I think there needs to be changes within the NHS in
order for people to access healthcare better. I think the
resources that are given and the information that goes out needs
to be more specifically tailored to these communities if that’s
who you’re trying to engage with, because there’s so much that
goes on in the community that’s not known outside of the
community, and it’s not spoken about, and within different GRT
communities as well. You know, there are different GRT
communities all around the UK, and what goes on in them is not
known to other GRT communities either.  


So, it’s about being specific with the information that you’re
getting out, with who you’re actually targeting. And I think a
bit like we were saying earlier, it’s the women, you know. The
women have childcare responsibilities almost all of the time, and
they are the ones who bring up the children, but they’re not
necessarily the ones that make the decisions about the children
or the child healthcare. You know, women are expected to do jobs
in the morning. Women are not available before 11 o’clock in the
morning. So, think about when you’re making appointments for.
Think about when you’re going. I think it is going to be a long,
long road before we get there, you know, with building trust and
getting the information out there, but I think we can make a
start. 


Naimah: Yeah, it does seem like there is lots of ways we can
start tackling it slowly. Moestak, I wonder if you had anything
you wanted to add. 


Moestak: As a public health specialist, you know, we’ve not been
taught genomic medicine or genomic health at all in terms of how
that can benefit and radically change the NHS and improve
determinants of health, so that’s a massive gap of knowledge
within the healthcare sector and professionals. But I think in
terms of addressing the historic mistrust, I think there needs to
be an acknowledgement and a real openness around the historic,
you know, abuse and unethical practices that have existed within
health. There are other countries that are much more advanced in
that and really embedding that within communities through
pledges. That long-term kind of piece of work for me is missing.
You know, it’s that wider education piece that’s missing that
needs to be really embedded in the culture. 


But I think also investing in the infrastructure in the
community. Like far too often, if the long-term vision is not
there, communities are reluctant to get involved and have trust
within that, so I think that’s an important part as well. And I
think it’s also about demonstrating the benefits of genomic
medicine. I think that needs to be done in a community level way,
through storytelling. I know that there’s now a lot of
development around cancer treatments around genomics, but I think
it’s about having those people who have those lived experiences
from different communities to be able to share the benefits and
demonstrate that through their way, and being appropriately
reimbursed as well. I think that’s really important. 


I think generally, I think there’s a long way we’ve got to go.
I’ll never forget when I went to Vancouver on a conference around
health, and there was a lot of reconciliation there, where there
was really acknowledgement, and the indigenous communities there
that have a lot of health disparities were able to kind of
overcome some of that and start building as a community and
addressing tackling health inequalities because that trust was
built and that acknowledgement from high up, from government
level, all the way trickled down to local. I think also patient
centred approaches around – like we mentioned, we talked about
linking the cultural norms and the values and the beliefs that
people have, and the skills and the assets that they have to be
able to lead on these solutions themselves, that really needs to
be embedded to build trust.  


Aman touched on the perception around what could be done with
genomic data. I don’t know if Aman wants to elaborate a bit on
that, but that’s really important. It’s a big barrier. It’s how
do we create transparent ways of storing data, but also use
various ways of communication. It doesn’t have to be traditional
reports. It could be through podcasts. It could be like community
messaging.  


Naimah: Yeah, I think that’s a really important point. Aman, did
you want to come in on that? 


Aman: Yeah, I think sharing the stories of the past in an
appropriate setting, in an appropriate manner as well – ‘cos it’s
a bit of a double edged sword, ‘cos you don’t want to scare
people who are unfamiliar with these stories, but at the same
time there’s a moral responsibility for all of us involved in
this space to speak about these issues, one from the perspective
of acknowledging what’s happened in the past, so then people feel
like, “Okay, you’re not trying to hide anything here,” but from
the perspective of also that we need to make sure that we don’t
repeat some of the mistakes in the future, and that as people
involved in genomic healthcare and involved in this space, that
we’re cognisant of these misgivings in the past, and we’re
cognisant of our responsibility to safeguard communities in the
future. 


Naimah: Okay, so we’re going to wrap up there. Thank you so much
to our guests, Anna Smith, Aman Ali and Moestak Hussein for
joining me today as we discussed the barriers to access to
genomic medicine for diverse communities, and the impact it has
on these communities. If you’d 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 and producer,
Naimah Callachand, and this podcast was edited by Bill Griffin at
Ventoux Digital.