The University of Cambridge and our funders have historically benefited from colonial advantages, which have led to the establishment of power and privilege. Their legacy is intertwined with the exploitation and extraction of resources from colonised regions, contributing to their current prominence and resources. Acknowledging this colonial history is essential in research involving communities who have felt disenfranchised from science. We recognise that the privilege of even having this website and our academic platform is shaped by historical injustices and systemic inequalities, affecting the dynamics of public engagement about science.
Acknowledging privilege involves actively engaging in self-reflection, learning about the institutions’ historical role and striving for equitable partnerships. Such self-reflection is operationalised via the personal commitment and training in anti-racist practices that the core team have participated in. We seek to mitigate power imbalances, foster transparency and promote genuine and authentic collaboration with all of our partners.
Collaborative decision-making, co-designing research, and involving community leaders empower marginalised groups in the research process – we have partnered with community engagement experts, Centric, in the design of this project. By acknowledging its colonial past, and involving marginalised communities as partners in research, small steps are taken towards cultivating ethical research relationships that honour the principles of fairness, justice and respect.
Our research has demonstrated that everyday talk about genomics currently, used by researchers and clinicians alike, has the potential to alienate already disengaged public audiences. We interpret our findings, not in terms of illiteracy about genomics, but as illustrative of the very real socio-historical inequities and inequalities that exist for people from marginalised communities. The conversations about genetics that led with the science and its benefits were triggering for participants, this revealed itself as cynicism and mistrust. And thus continuing to frame our science, only through its benefits, however well-meaning, has the risk of doing harm. The genomics community has an obligation to take heed of the voices represented in this work – not only is this ethically just (and at a minimum, courteous) to care about how one’s language lands with the target audience, but it is also pivotal if the genomics industry wants to embark on conversations with community groups about including them in genetic research, thus diversifying the ancestral and ethnic background of existing datasets.
Scientific racism is an upstream sociological causal factor and a historical fact. And, as demonstrated in our findings, this is an issue that participants articulated directly in response to all of our linguistic framings that led with the benefits of genetics. We neither prompted them for this, nor sought it out, but nevertheless, it was clearly expressed. The enthusiasm of scientists and clinicians to extoll the benefits of genomics, however well intentioned, should be given thoughtful consideration. As our research demonstrates, what we say and what people hear can be worlds apart. Ignorance of the intense emotion about present-day scientific racism is no defence and it is insufficient to claim we are neutral actors – ‘I am simply explaining the benefits of the science!’ when the impact of the genetics research is open to subjective interpretation, positionality, intense debate and sits within the context of misuse.
Our sample included 100 adult participants of mixed ages and self-identified gender, English was the first language for all participants. According to the self-identified socio-demographic data provided (including ethnicity) there were 25 people in each of the following groups : i) Participants who self-identified as being from a Black African background, ii) Participants who self-identified as being from a Black Caribbean background, iii) Participants who self-identified as being from a Pakistani background and iv) a final group of participants of various ethnicities who had lower educational attainment, lower income levels and occupation categories indicative of socio-economic disadvantage.
The results below interpret what language is currently used to communicate genetics and how this is received by the participants in our study.
Current linguistic approaches and why they do not work
What we currently do
What it involves
Language tested
Why it does not work
Lead with scientific benefits
Fails to articulate personal significance
“Your contribution today could be the key to discoveries that can help future generations. And it could live on to change the world as scientists continue to use it into the future.”
“It was very sciency…We want to be cured now. Not in the future or not when we’re dead.” (Participant from the disadvantaged socio-demographic group)
Assumes trust that isn’t given
“By looking at the unique set of quirks and glitches in your DNA, scientists can understand a lot about how to give you the best healthcare.”
“Scientists tell us this about COVID, that about COVID. And a lot of the information is ambiguous, and it changes every day…. Just for me, it doesn’t hold any trust and any value.” (Participant from the Black African group)
Lead with health benefits
Fails to acknowledge concerns about historical injustices
“For this research to help everybody, it needs to represent everybody. And that means it needs to include everybody. People from all backgrounds, ethnicities and walks of life. Opting in means more than just saying yes to research. It means saying yes to an equal health care system for all.”
“So, we’ve been used as lab rats, we’ve been used as test dummies. So that’s why we are reluctant.” (Participant self-identifying as from the Black African group) “I heard ‘everybody’; we can all of a sudden help everybody. Okay, so now, what? Are we admitting that there was a point where we weren’t being helped? Even though, let’s talk it as it is, we’ve always known that. We don’t get the same amount of help, or we are not taken seriously. Or, they just ‘okay, it’s sickle cell, they’re black.’” (Participant self-identifying as from the Black Caribbean group)
Fails to acknowledge concerns about present day inequalities
“The result is better healthcare for you and others in your community. That means improvements like diagnosing diseases earlier and more accurately, finding better, more personalized treatments, and, ultimately, making sure you get the medical care you deserve.”
“There’s a thing called the postcode lottery … It is personalised care because it’s at a price. So yes, maybe you can have that type of treatment, however, if it’s a cost, where we are within the budget that we have, you might not get it.” (Participant from the disadvantaged socio-demographic group) “If you look at auto-immune disorders that affect black people, they’re never looked at. And black women, they’re most likely to die in childbirth so they’re always overlooked. So now, they’re going to help us, absolute they won’t. That won’t happen.” (Participant self-identifying as from the Black Caribbean group)
Oversimplifies the message
“In your DNA scientists can understand a lot about how to give you the best healthcare”
“I don’t even know if scientists understand DNA fully. From what I know, scientists only know a very small about our DNA and a lot of our DNA is not comprehendible at the moment. So, I think there’s a lot more to be found through science.” (Participant from the disadvantaged socio-demographic group) “A lot of the factors that contribute to our healthcare, perhaps, are driven by the fact that we are, generally, in the UK, less socio- economically well-off than other ethnicities or other racial groups. It doesn’t necessarily mean that us providing our data will necessarily provide better healthcare.” (Participant self-identifying as from the Pakistani group)
Assumes trust that isn’t given
“Using genetic testing, doctors and scientists can effectively Google the wealth of information that’s stored in your DNA…If you choose to have a genetic test, scientists along with several government agencies and non-profit organizations are standing by to answer your questions and make sure you have everything you need to make the right decision for you.”
“I would never, because you just don’t know what they’re really using your information for. Can it be used against you later on? What they’re developing with it? They don’t really communicate things well, in general anyway. So, any type of government access for me would be a no, like I just, no.” (Participant self-identifying as from the Black African group)
Content and structure of the optimised message
What we can do
What it involves
Language tested
Why it works
Acknowledge doubts and distrust
Validate concerns about past and present injustices
“We know that a lot of people have questions –and even concerns –about giving permission for their genes to be used in research. And studies have shown that, in general, concerns among ethnic minorities can be even greater. And there are real reasons for this. Some are connected to personal experiences and some to historical injustice. These concerns are real.”
“It makes me feel a bit more seen, that they can understand and that they have some appreciation for other points of view…Especially in contrast to [messages], where it was almost good to get as many people to donate, it is a lot more nuanced message that still outlines the benefits.” (Participant self-identifying as from the Black African group) “Acknowledgement that ethnic minority people are very sceptical, acknowledgement that in the past history, that this particular client group has been not treated fairly in regards of treatment for health wise. So, I think acknowledging that, I think that has been positive. So not ignoring the past. (Participant self-identifying as from the Black Caribbean group)
Validate doubts due to a lack of familiarity with genomics
“If you’re wondering what genetic testing is all about, you’re not alone. Healthcare can be confusing enough as it is, and it would be surprising if people didn’t have questions about things like DNA testing”
“You can resonate with it because you know, when you asked us at the start all these questions, a lot of us, we really didn’t know anything about it. So it makes you feel more accepted by the fact that you have kind of no knowledge or not very broad knowledge on the subject.” (Participant from the disadvantaged socio-demographic group)
Empower people
Frame it as a voluntary choice
“It is your health, your genes, and your choice.”
“I think it is right. It is my choice. It is almost like there is no pressure, really.” (Participant self-identifying as from the Black African group)
Emphasise control where relevant
“The most important thing to know is this: you control whether you share your genetic information with others. One reason to do so is to receive better healthcare. In this case, the results of a genetic test will remain private, just like your other medical records, and only you and your doctor will have access. Another reason is to volunteer to have your genetic information used in research for new treatments. In this case, your genetic information and your medical history is protected in a secure database.”
“I think it’s good that you have a right over it, so it’s not just like they just take it and then you give it to them and they can do whatever they want. You still have your say in it” (Participant from the disadvantaged socio-demographic group)
Calm concerns
Avoid emphasising novelty. Instead, ground genomics in what is familiar
“Today, your doctor can use a simple blood test to uncover a universe of information, like your red blood cell count or your cholesterol. In much the same way, they can look at your genes to get a more complete picture of your health, like your risk for developing certain conditions. Ultimately this extra information means they can make better decisions for you and with you. Genetic testing isn’t a replacement for the tools doctors use today, it’s just one more piece of information that works alongside everything else”
“I thought it was interesting. The part where it said it might be unfamiliar for you to hear about it, it’s just like other tests and the reassurance it’s giving you the best care possible, I think that was quite reassuring and also the fact that it was just saying we just want to improve ways in trying to make your health better.” (Participant self-identifying as from the Black Caribbean group)
Build some context around it: be specific about what is and is not involved
“When you put your genetic information into the care of a doctor or a researcher, it still belongs to you and you have a say in how it’s used. That right is protected by several different laws that were created to make sure your data is handled securely and responsibly…The main way the privacy of your data is protected is by restricting who can see it. When you take a genetic test for medical reasons, only members of your care team – like your doctor – can access the results.”
“In a way it was very reassuring, and I think it was the first video that actually talked mostly about the security and mostly about not to get you in some way, but to reassure you and protect your information, and I wish it was something like this from the beginning. I would feel much more reassured and much more secure.” (Participant from the disadvantaged socio-demographic group) “I think that’s one of the questions I probably had in my head, to be honest, throughout this session was whether our identity would be anonymized when it’s going to researchers. So, that’s quite good to know.” (Participant self-identifying as from the Pakistani group)
Introduce benefits after the preparatory work above has been done
Move to personal benefits by articulating the specific relevance for the target audience
“It’s important you get the information you need on why you might –or might not – want to consider opting in to sharing your genetic information to help create better, fairer, and more personalized medicine for you and your family, and families like yours.” “When scientists are able to compare more people from many different backgrounds, they can gather more insights and, over time, help more people.”
“It did mention family a bit and that sounded more like immediate family. I can resonate with that quite deeply to be fair. It’s a bit like it would benefit me, benefit my immediate family, my loved ones around me, and then the future.” (Participant from the disadvantaged socio-demographic group) “People like that, who aren’t rich, middle-class: are they also going to benefit from this? Because at the end of the day, that’s where I came from, to where I am now, and I would like for my import not to be disregarded just because of race or what your class is…So, me helping gather DNA, I would like people from my roots to also benefit from this.” (Participant self-identifying as from the Pakistani group)
State concrete, tangible benefits and (where possible) incorporate specific examples
“In the near future, we’ll be able to use a bit of blood or saliva to do a DNA test. The results of this test can mean less guesswork and the ability to diagnose diseases like breast cancer earlier and more accurately. And the more people who share their DNA for researchers to study, the more medicine can be precisely designed to work for you and your family.”
“I like it. I thought it was the strongest out of the ones that we’ve seen so far. They try to appeal to you as an individual. They explained what it was going to be used for. They also dropped in the C word, which most people know somebody or has some kind of connection with that. That kind of makes like your ears prick up more and you pay attention.” (Participant self-identifying as from the Black African group)
Finally, nod at the bigger picture by appealing to wider, collective benefits
“If you do participate, your doctor can spot patterns and learn more about how they affect your health by comparing your genes with people who share a similar heritage. The result is better healthcare for you and others in your community.”
“Well, probably [it was] not [more motivating] for me personally because obviously I’m not a minority ethnic group, although my husband is. Not for me, but it gave me a better feeling about the whole project, maybe. Yes. I’d say it does make me feel a bit more positive about the whole concept of it.” (Participant from the disadvantaged socio-demographic group)
We entered the Socialising the Genome films into various film festivals around the world; the above film is Only Human co-founder, Prof Anna Middleton, talking in 2017 at the International Filmmakers Festival in London. The reach of these films into diverse film communities showed us that the concepts of genetics could translate into mainstream society and started us off on a journey of exploring how to make films that resonate with the public.
Below are the film festivals that a selection of our films were shown at throughout 2016-2019.
The Socialising the Genome Films were also showcased on Genomics England’s website and also the Genomics Education Programme at Health Education England.
Genetic counsellors are an internationally recognised group of highly skilled healthcare professionals with training and expertise in genomic medicine and counselling skills [1].
The United Kingdom (UK) leads in developing this profession and has established the gold standard for genetic counselling, which is emulated across Europe and other parts of the world. The delivery of genetic counselling in a clinical setting is supported by evidence, genetic counselling theory, and uses established, validated outcome measures to evaluate success. It has been demonstrated to be highly valued by patients. The number of genetic counsellors globally is approximately 7000, practicing in at least 28 countries. In the UK, there are approximately 300 genetic counsellors, with the vast majority practicing clinically in the publicly funded National Health Service.
The films were produced by Only Human co-founder Prof Anna Middleton, when she was the previous Chair of the Association of Genetic Nurses and Counsellors, the professional body that represents genetic counsellors in the UK.
The films were designed to offer information about the scope of what genetic counsellors do, which in turn offers insight into what happens within genomic medicine consultations, education and research.
“On behalf of the AGNC I am delighted to support the Only Human project and promote the work of genetic counsellors across the world. Engaging with public audiences, before they become patients, is pivotal in raising awareness about the implications of genomic medicine and ensuring that we are doing our best to reach everyone as best we can”
Roberta Rizzo, Chair of the Association of Genetic Nurses and Counsellors
Only Human has collaborated with Jonathan Barnbrook, the celebrated award-winning filmmaker and graphic artist, to create a film to raise a challenge to us all, and inspire hope for better.
Using the reactions of ordinary people to the word ‘genetics,’ drawn from research focus groups delivered by the language consultants Maslanksy, Jonathan has used the typographic animation of their words and feelings to ‘give visual voice to the seldom heard.’
Barnbrook’s film, conceived and scripted by Julian Borra, not only illuminates the problem of the myths, monsters and misconceptions that the word genetics raises for some. It shows us that public audiences are asking doctors and scientists to think carefully about how they communicate around the science that is transforming medicine – and it raises a challenge to all those seeking a solution in Only Human terms.
‘It’s only human to want to make things better.’
This is what the Only Human project is about.
To hear more about Jonathan’s reasons for collaborating with the Only Human project and how he approached the task, watch the interview below.
Behind the Scenes Film of Jonathan Barnbrook interview on the Only Human project
Jonathan’s work spans a kaleidoscopic cultural universe of music, art, protest, performance, design, fashion and general communications.
We wanted to break down the barriers to good health and wellbeing by showing, not just telling, of the positive and real benefits that come when we open up to one another.
The film, with Jean and Tre, was one element of this campaign. We created more domino boxes that were homed in barber shops, cinemas and community centres. They were also used to kick-start conversations about genetics, with patients with sickle cell disease.
An outdoor advertising campaign ran across targeted parts of the UK and we held a cinema launch.
Jean and Tre
Jean came from Jamaica to the UK in April 1960 aged 19 yrs. She has four children and eight grandkids, ranging from, 11 to 41yrs, who keep her nice and busy! She worked as a nurse and care manager for over thirty years and now, at 84 years young, enjoys volunteering.
She loves nothing more than family get togethers to celebrate every occasion possible.
Tre, Jean’s 29 yrs old grandson, comes from North London. He loves everything creative; singing, performing and designing. Tre is currently in the West End musical theatre, Tina.
He says about this project ‘I aspire to inspire, and I hope there are young kids or elders who watch this and feel good knowing that grandparents and children can talk to each other and still love each other’s company’.
The Crew
Working with world famous film and production company, Outsider, we ensured that we assembled a truly diverse group for the making of this film.
From the make-up artists, camera operators, director and lighting experts – this is what every film production crew should look like.
Overview of what we Achieved
Watch the film above for an overview of the reach and scale of the Liming with Gran campaign – the dominoes set has been used hundreds of times by people from the Caribbean community, helping to start conversations about genetics.
It has long been accepted that scholarly research in the social sciences will often (and should) involve research participants as partners in the research process – both to deliver and co-design research and to generate new knowledge together with the researchers [1].
Thus, for setting up the Only Human project, we partnered with Community Research experts, Centric. The Centric team provided community input into the design and structure of our project and created a scoping strategy for us to follow.
“Centric Community Research is a Research Hub developed, owned, and operated by the communities of Lambeth and Southwark. Informed by a history of racism and discrimination against people of colour and our lived experience of racial inequities that we still face to this day, we aspire to empower diverse communities of colour across the urban landscape.”
Centric’s role in the Only Human project was to set us off on the right footing so that we could brief our first film makers on community perspectives of genetics. When writing the Research Ethics Committee approval paperwork, required by the University of Cambridge, we also had input from the social scientists from Centric on the most appropriate methods to recruit, consent, film, and analyse data from community audiences we wanted to show our films to.
As Only Human is underpinned by the visual interpretation of creative assets and has a strong message around inclusion – inclusion of missing voices, inclusion of interesting and different views about genetics. Through the partnership with Centric we have received endorsement (and indeed Research Ethics Committee approval from the University of Cambridge) to film and show members of the public offering their feedback on the films shown on this website. Once we have completed new community engagement research about each film, our website will become a platform for participants themselves to be included, be seen, and be heard, offering their own feedback. Thus the website itself becomes a home for films that inspire conversations about genetics, and films that show these conversations. This forms part of the benefit-sharing aspect of the research.
Over the last 20 years film has been used in social sciences research globally [2], both as research data and more recently as data for dissemination of research findings through participants’ perspectives [3]. This not only proffers the data for secondary analysis by other researchers, but also provides a springboard for new conversations about the project with new audiences. The film lives on as a method for continual reflection and imagination for new audiences who watch it. It has also been shown to generate and demonstrate new knowledge within communities who participate in being filmed [4]. For the research participants themselves, this opportunity to contribute towards enabling thought and reflection in others, is often a motivating factor for choosing to be filmed to start with [5]. ‘Being heard by others’, ‘having a platform’, ‘gaining visibility’ are all personally reaffirming reasons to participate [6],[7],[8]. This is a phenomenon well documented in audio-visual ethnography[9].
[1] Rosemary A. Barbera (2008) Relationships and the Research Process: Participatory Action Research and Social Work, Journal of Progressive Human Services, 19:2, 140-159,
[2] Claudia M. Mitchell & Marni Sommer (2016) Participatory visual methodologies in global public health, Global Public Health, 11:5-6, 521-527
[3] Michela Franceschelli & Adele Galipò (2021) The use of film documentary in social science research: audio-visual accounts of the ‘migration crisis’ from the Italian island of Lampedusa, Visual Studies, 36:1, 38-50
[4] Tremblay C., Jayme BDO. (2015). Community knowledge co-creation through participatory video. Action Research, 13, 298–314
[5] Yang K. H. (2015). Voice, authenticity and ethical challenges: The participatory dissemination of youth-generated visual data over social media. Visual Studies, 30, 309–318
[6] Budig, K., et al. Photovoice and empowerment: evaluating the transformative potential of a participatory action research project. BMC Public Health 18, 432 (2018)
[7] Zoettl P. A. (2013). Images of culture: Participatory video, identity and empowerment. International Journal of Cultural Studies, 16, 209–224
[8] Mandy Hughes (2021) Filmmaking as empirical research: working with people from refugee backgrounds to share stories about food, Visual Studies, 36:1, 11-24,
[9] Klaue, Léa, and Martin Zimper. 2020. Research Video: Audiovisual Ethnography and beyond. Dearq (26): 28-35
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You are invited to click on, and answer, the questions that appear under each film on the website. This research study aims to understand public perspectives on films about genetics.
Description of the Study:
Your survey answers are anonymous, meaning we won’t ask for your name or any identifying details. Your responses will be grouped together with those of others, ensuring your privacy. It will take on average 3 minutes to watch a film and answers the questions that accompany it.
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Benefits of Participation:
While there are no direct benefits to you, your responses will contribute to our understanding of how to communicate better about genetics.
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There are minimal risks associated with participating in this research. Your responses will be treated with strict confidentiality. No personally identifiable information will be collected, and your answers will be kept strictly confidential and used only for research purposes. By clicking on the survey answers, you confirm that you have read and understood the information provided in this consent form.
We have received Research Ethics Committee Approval from the Faculty of Education Research Ethics Committee, University of Cambridge for delivering this project and activities. Reference: Ethics_020_2324.
Only Human
Some people are alienated by and distrustful of advances in medical science and research, especially around DNA and genetics.
The majority of the British public feel that scientists should listen more to what ordinary people think. We agree with them. And we research how to communicate better. Which is why we’ve developed this website.
Watch a video, then use the quick-response survey questions to let us know how you feel about it. There’s a range of videos you can watch, in different genres, tones and lengths.
You can also download them all for free and use them yourself.
If you want to join our consortia, contribute, donate or just be part of the Only Human movement then contact Professor Anna Middleton: kavlicentre@educ.cam.ac.uk
