Power Dynamics

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. 

Behind the Scenes: ‘Voices of Empowerment’

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

[1] Middleton, A., Taverner, N., Moreton, N. et al. The genetic counsellor role in the United Kingdom. Eur J Hum Genet 31, 13–15 (2023). https://doi.org/10.1038/s41431-022-01212-9

Behind the Scenes: Jonathan Barnbrook’s Film

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.

credit images: Jonathan Barnbrook

Behind the Scenes:
Liming with Gran

The Campaign

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.

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

Community Research

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.” 

www.Centric.org.uk

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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Survey FAQs

Introduction:

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.

Voluntary Participation:

Participation in this survey is entirely voluntary. You can choose not to answer any question or to exit the survey at any point without providing a reason. Your decision will have no impact on you.

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.

Risks and Confidentiality:

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.

Who is this for?

The Only Human project is for anyone who communicates anything about genetics to anyone. It exists to serve the public

There is much written, audio and film communication about genetics – patient leaflets on genetic testing, websites from pharma on gene therapies, participant info sheets for genetic research, and advertising for direct-to-consumer tests.

The narrative arc tends to start with what genetics is (e.g. ‘we all have 20,000 genes, DNA is made up of a code of letters’) and what the benefits are (e.g. ‘we study genetics to understand what causes cancer’). And yet….between all of us writing such text, have we thought about the impact of our messages on collective public audiences? Probably not. Do we know what public audiences think and feel when they read such texts? Have we asked?

We are seeking to build a consortia of partners who want to learn and build the communications evidence-base together. You might be a genetic counsellor working in the NHS, you might be a scientist working in public engagement, you might sit on the board of a pharmaceutical company, you might sit on the board of a genetics research non-profit – but between you all, you want to understand how to gently nudge awareness about what genetics is and what it can offer, to broad public audiences.