This research is all about connection and so we’d love you to tell us how each film makes you feel.
To read more about our process, have a read of our evidence base page.
AKA The Only Human Origin Story
Back in 2013, Only Human’s three principals agreed that there was something fundamentally anti-social about how medical science ‘spoke’ to the ordinary people especially around the subject of genomics. The language used sometimes upset, confused or disenfranchised people instead of informing and empowering them.
So the three (Middleton, Parry and Borra) collaborated on a project to research whether a more insightful and emotionally driven type of creative story telling might provide better ways to start a conversation.
Building on insights from focus groups with everyday people from a housing association in London, a parents group, a men’s curry club, a choir and a women’s institute, new creative ideas were born on how to explain genetics to people who know nothing about it. And so Gnomes, Glitches, new sexual euphemisms, and the odd conspiracy theory entered the genomics conversation.
This research is all about connection and so we’d love you to tell us how each film makes you feel.
To read more about our process, have a read of our evidence base page.
Can a metaphor for genomics be music to the ears for patients?
Only Human worked with the godfather of music video and film maker Tim Pope to bring the complexities of genomics to life with a simple musical metaphor.
The series of 6 films were conceived and scripted using insights and observations from Genetic Counsellors at Addenbrooke’s Hospital. They have been trialled by genetic counsellors at Guy’s and St Thomas’ Hospital in London, directly with patients attending the Genomic Medicine Service. They cover topics that are routinely covered in clinical conversations, including: What is a gene? – X-Inheritance – Recessive Inheritance – Dominant Inheritance – The meaning of De Novo Variants– Outcomes from a Genetic Test.
Through our previous work, we have demonstrated that whilst innovative engagement approaches have been trialled (e.g. arts-based methods, participatory films and deliberative methods) a universally accepted best practice for broad public audiences remains elusive. Likewise, a consistent, evidence-based strategy for reaching and radiating across diverse populations is lacking. Furthermore, engagement practices that are specifically designed for historically marginalised groups, addressing both perception and actual exclusion, are still only in their infancy.
The following research guides our Insights Framework for the Only Human project; it is based on an academic narrative review which has explored attitudes towards genomics from broad public audiences and novel public engagement methods. It is also based on our collective experience as well as research insights into the difference between ‘what we say and what people hear’ when we talk about genomics.
There is no existing, universally accepted strategy for engagement about genomics
“As detailed in its flagship report, Genome UK, the UK government recognises the vital role that broad public engagement across whole populations plays in the field of genomics. However, there is limited evidence about how to do this at scale, particularly for public audiences who are not especially interested in the science, are unsure of the relevance to their lives or who feel disengaged from it. We use a narrative review to explore: (i) UK attitudes towards genetics and genomics and what may influence reluctance to engage with these topics; (ii) innovative public engagement approaches that have been used to bring diverse public audiences into conversations about the technology. Whilst we have found some novel engagement methods that have used participatory arts, film, social media and deliberative methods, there is no clear agreement on best practice. We did not find a consistently used, evidence-based strategy for delivering public engagement about genomics across diverse and broad populations, nor a specific method that is known to encourage engagement from groups that have historically felt (in terms of perception) and been (in reality) excluded from genomic research. We argue there is a need for well-defined, tailor-made engagement strategies that clearly articulate the audience, the purpose and the proposed impact of the engagement intervention. This needs to be coupled with robust evaluation frameworks to build the evidence-base for population-level engagement strategies.”
Leading with the benefits of genomics falls flat for some
“The way we ‘talk’ about genetics plays a vital role in whether public audiences feel at ease in having conversations about it. Our research explored whether there was any difference between ‘what we say’ and ‘what people hear’ when providing information about genetics with community groups who are known to be missing from genomics datasets. We conducted 16 focus groups with 100 members of the British public who had limited familiarity with genomics and self-reported as Black African, Black Caribbean, Pakistani as well as people of various ancestral heritage who came from a disadvantaged socio-economic background. Participants were presented with spoken messages that explained what genomics was and their responses to these were analysed. Results indicated that starting conversations which framed genomics through its potential benefits were met with cynicism and scepticism. Participants cited historical and present injustices as reasons for this as well as mistrust of private companies and the government. Instead, more productive conversations led with an acknowledgement that some people have questions –and even concerns –about genomics, before introducing any of the details about genomics. In order to diversify genomic datasets, we need to linguistically meet public audiences where they are at. Our research has demonstrated that everyday talk about genomics, used by researchers and clinicians alike, is received in different ways than how it is likely intended and we may inadvertently be further disengaging the very audiences that diversity programmes aim to reach.”
A public backlash towards genomics is a risk all of us working in genomics must share
“Public audiences do not distinguish between organisations working in genomics. This means a public backlash in one area of genomics impacts all – whether we are in healthcare, in non-profit academic research or for-profit industry developing life-saving gene therapies. Taking proactive steps to understand, explore and address public concerns is something we should be doing collectively because no one organisation can mitigate risk in this arena alone.”
The core team running this project are friends and colleagues who have been working in engagement, counselling, public policy and communication research about genetics for over 15 years. This project is not-for-profit, but for humankind.
We have no positive/negative spin on genetics, nor do we seek to increase uptake in genetic research or sell anything. Our aim is to find out whether there are better ways to connect with public audiences who switch off before a conversation has even started. We are aiming to build a consortia of partners who want to build, share and use a collective engagement strategy to communicate genetics better.
Founding Individuals
Professor Anna Middleton, Director Kavli Centre for Ethics, Science, and the Public, University of Cambridge. Expert in social science research on ethical issues raised by genetics, genetic counsellor and psychologist. Has received historical funding from Wellcome, Wellcome Connecting Science and receives current funding for Only Human from the Kavli Centre for Ethics, Science, and the Public.
Vivienne Parry OBE, Head of Public Engagement, Genomics England, London. Journalist, broadcaster, expert in engagement and communications about science. Funded by Genomics England.
Julian Borra, Founder of Thin Air Factory, Brighton, expert in creative story telling and communications, has received historical funding from Genomics England and Wellcome Connecting Science. Receives current funding from the Kavli Centre for Ethics, Science, and the Public.
Kate Orviss, Lead of Global Genomics Initiative, People Policy Projects (PPP), London, expert in policy and law, funded by PPP.
A note on Funding
The intellectual ideas for the Only Human project have been bubbling away for more than 15 years and through this time the core project team have received their salaries from multiple different organisations. We are grateful for, and want to acknowledge, the historical funding we have received that has enabled us to think through what Only Human could be – Wellcome Connecting Science, Wellcome, Genomics England, Kavli Foundation, People Policy Projects. We are also so grateful for the in kind donation of time from so many colleagues and organisations, who have covered their own costs to contribute ideas that are now baked into the Only Human project – Ridley Scott Film Productions, Ketchum PR Agency, Rockcorps, Glassworks, OKRE.
The funding we have received historically has finished and the research outputs and creative assets to come from this are all in the public domain and are available for anyone to use, cite, share and download. Thus the films we have made historically (e.g. for Socialising the Genome, The Music of Life, In our Lifetime, Liming with Gran, Maslanksy Focus Group Films, Voices of Empowerment) have been created, with consent of all partners, for public distribution. And indeed our films have been publicly hosted on YouTube for many years. For the films that were created as part of a historical research project, appropriate research ethics approval is in place.
Moving forward, the Kavli Foundation grant to the Kavli Centre for Ethics, Science, and the Public are the active funders of the Only Human project and so in terms of academic scholarship, this project sits at the University of Cambridge and has been designed to meet the Kavli Foundation’s vision: “Advancing science for the benefit of humanity”.
Only Human are seeking new collaborators and funders so that we can radiate the project out across science and society.
Community Engagement Partner: Centric
One of our partners is Centric – experts in community engagement with members of the public from historically marginalised communities. Using skills in ‘social brokerage’ they will reach community audiences to do focus groups on some of our filmed assets. Centric are one of our key community research partners who will deliver a new arm of qualitative, filmed research for the Only Human project. Centric have received historical funding from Wellcome Connecting Science to complete a set of recommendations on how community engagement could be delivered in any work on genetics. Centric’s active involvement in delivering community research for Only Human is funded by the Kavli Cenre for Ethics, Science, and the Public at the University of Cambridge.
Creating a Consortia
In 2022 we launched our Call to Action with Public Policy Projects, aligned to co-incide with the G7 meeting in the UK. It started with a webinar, then a series of 6 roundtables that brought together experts in genomics, public engagement, creative storytelling, ethics, policy and then ended with a workshop at a global genomics conference. Here we started to build our network. With pump priming funding to get the project up and running from Wellcome Connecting Science, Genomics England and the Kavli Centre for Ethics, Science, and the Public, the Only Human project was born.
As we set out in our Lancet piece, every organisation operating within the field of genomics has the potential to either help or hinder its ability to deliver fair and equitable healthcare outcomes for all. Just one slip up by one organisation, one badly orchestrated public engagement, one misstep, or an ill-advised communication could set the whole realm of genomics back decades simply inflaming the distrust ordinary people already feel about genomic science, the scientists and their intentions.
To that end Only Human are seeking support from partners to build a consortia
The ask: support is offered into the project to operationalise it, fund the creative asset production and participate in (and gain from) the research.
The offer: everyone in the consortia can use the creative assets with their own audiences. All assets are free to download and use. We will co-ordinate the research and offer ethical oversight to the project, as well as build and share the evidence-based that we collectively gather. This will then be available and free for anyone working in the genomics world to use.
The result: together we build an evidence base for communication with broad public audiences around genomics. We create the conditions so that more publics and patients are aware of what genomics is, thus opening up conversations that allow such audiences to put forward their voices to impact policy and shape the delivery of research and clinical practice. If more public audiences feel they have a vested interest in the science, then they are in a stronger position to have an opinion about it. Ultimately this means collectively sharing a mitigation against a public backlash – well, an informed public backlash is perfectly acceptable! but a knee-jerk response based on a perception that ‘genomics’ is based on ‘gnomes and economics’ (yes we have heard this in our research) may do more harm than good to the entire industry of genomics. Together we rectify the historic societal imbalance that currently blights genetic research outcomes and healthcare outcomes more generally.
Please contact Professor Anna Middleton if you want to join our consortia: kavlicentre@educ.cam.ac.uk
It’s only human…
Does this make you feel anything ?
X
liked it
not at allvery
indifferent
not at allvery
mentally engaged
not at allvery
bored
not at allvery
sensed a deeper meaning
not at allvery
confused
not at allvery
sparked my interest
not at allvery
unsettled
not at allvery
1 / 8
About this survey
This research is all about connection and so we’d love you to tell us how each film makes you feel.
To read more about our process, have a read of our evidence base page.
Fear, distrust, and the hope for the better
Only Human has collaborated with Jonathan Barnbrook, the celebrated award-winning film-maker and graphic artist, to turn one of our research focus groups into an animation. He explored how a creative wrapper could provide additional agency to seldom-heard voices, using imagery to highlight some instinctive reactions to the word ‘genetics’.
Jonathan’s film uses feelings and emotions as a hook to summarise what the Only Human project is about.
It also shows us that public audiences are asking doctors and scientists to think carefully about how they deliver (and communicate) science that is transforming medicine.
This research is all about connection and so we’d love you to tell us how each film makes you feel.
To read more about our process, have a read of our evidence base page.
What do we say, and what do people hear, when we talk about genomics?
Only Human worked in collaboration with Maslansky the language experts, to explore how medical science ‘speaks to us,’ especially around topics like genetics, which are often considered controversial or contentious. Speaking to people seldom heard in the genomics conversation about how the kinds of language and phrasings commonly used to communicate genetics made them feel, the findings were both enlightening and sobering.
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
