Author: annam

Power Dynamics

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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. 

Research Outputs from Maslansky

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Middleton, A., Costa, A., Milne, R., Patch, C., Robarts, L., Tomlin, B., Danson, M., Henriques, S., Atutornu, J., Aidid, U., Boraschi, D., Galloway, C., Yazmir, K., Pettit, S., Harcourt, T., Connolly, A., Li, A., Cala, J., Lake, S., et al. (2023). The legacy of language: What we say, and what people hear, when we talk about genomics. Human Genetics and Genomics Advances, 4, Article 4. https://doi.org/10.1016/j.xhgg.2023.100231

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 doWhat it involvesLanguage testedWhy it does not work
Lead with scientific benefitsFails 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 benefitsFails 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 doWhat it involvesLanguage testedWhy it works
Acknowledge doubts and distrustValidate 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 peopleFrame 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 concernsAvoid 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 doneMove 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)

Behind the Scenes: Jonathan Barnbrook’s Film

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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

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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’.

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.

Community Research

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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

[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

Data Protection Notice

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Survey FAQs

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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.

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

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