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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.

Given the Lead Sponsor’s power over participants due to historical colonial legacies, upholding participant autonomy and beneficence is paramount. This is why the Only Human project has commissioned Centric as our community partner to lead the community engagement aspects of the project. To ensure mutual respect and reciprocity, the research emphasises collaborative decision-making, involving community partners in the study design, objectives and benefits. Continuous feedback loops allow participants to share the research direction; such feedback loops work between research participants and Centric community leaders and between Centric community leaders and the research team at the University.

Local norms are respected through culturally sensitive communication and engagement strategies that Centric will determine, based on their own lived-experience of belonging to local black and asian communities. Relationships are structured by Centric to minimise colonial dynamics by involving local community leaders to prioritise indigenous knowledge and valuing participants’ perspectives. This approach helps to dismantle power imbalances and foster equitable partnerships, reflecting the principles of autonomy and beneficence while addressing coloniality’s effects on research dynamics.

Collaborative decision-making, co-designing research, and involving community leaders empower marginalised groups in the research process. 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. 

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.

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:
Ketchum’s 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’.

Liv Little

Liv is of Jamaican and Guyanese descent via South London and
tells stories with heart, about the people and places that matter to her.

She is a writer and broadcaster and was the founder and CEO
of gal-dem, a magazine written by women of colour. Her work
spans journalism, audio, TV and her debut novel Rosewater
was published in 2023 by Dialogue Books in the UK and John Legend’s
imprint Get Lifted in the US. She was included on the Brit List
for 2022/23 and in Forbes’ 30 Under 30 media and marketing list.

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.

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

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 the Only Human project, we are partnering with Community Research experts, Centric. The Centric research is led by Dr Shaun Danquah (Founder and Director of Innovation), Dr Anthony Baker (Strategic Director, lead for our social sciences research) and Muhammed Rauf (Director of Business Development).

“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 is to lead the delivery of the community engagement and community research aspects of the project. Working with social science researchers and experts from within the community, they will design, recruit, consent, film, and analyse the data they collect from within the community audiences they belong to.

Centric will deliver a series of focus groups with members of their communities. These focus groups will be filmed, with consent from participants.

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, it means that our focus groups will offer a platform for participants themselves to be included, be seen, and be heard.

It also means that specific communities will have a visible, publicly accessible record of their contribution to the research that they can share within their communities. Plus, as the filmed focus groups will sit within this website, participants will be able to see their contribution situated within the context of the contribution other public audiences have made, within the context of high-level film production companies, and within the context of the outcomes/impact of the research as a whole. 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]. 

The Centric focus groups will be based around the films already appearing on this website.

Power Dynamics

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[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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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.

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.

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.