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.

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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.”

Middleton et al (2023) “Public engagement with genomics” Wellcome Open Res 2023, 8:310 (https://doi.org/10.12688/wellcomeopenres.19473.2)

 

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.”

Middleton et al (2023) “The Legacy of Language: What we say, and what people hear, when we talk about genomics” Human Genetics and Genomics Advances VOLUME 4, ISSUE 4, 100231

 

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.”

Middleton A, Parry V, Borra J, Oriviss K (2022) A public backlash towards genomics is a risk all of us working in genomics must share. The Lancet regional health. Vol 15, April 2022

 

We could do better about communicating science

“A third of people (32%) said that they rarely or never talked about science with family, friends or colleagues.”

“[Only] 22% people described themselves as feeling connected to science”

“38% saw scientists as being poor communicators.”

Government Department for Business, Energy and Industrial Strategy, Public attitudes to science 2019: Main report. 2019. Research Paper Number 2020/012. Accessed from:https://www.gov.uk/government/publications/public-attitudes-to-science-2019

We could do better about making science transparent and accessible to the public

https://www.edelman.com/sites/g/files/aatuss191/files/2024-02/2024%20Edelman%20Trust%20Barometer%20Global%20Report_FINAL.pdf#page=8.00

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.

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 Public Policy Projects (with special thanks to Kate Orviss, Lead of Global Genomics Initiative), 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.

We are now ready to build the consortia. 

Only Human has a number of partner types:

 

FOUNDING PARTNERS

CREATIVE PARTNERS

COMMUNITY RESEARCH PARTNERS

MEDIA PARTNERS

 KEY HISTORICAL FUNDERS

Seeking Support for this Consortia

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

Our Overarching Objectives are to…..

1. Build the evidence base for communicating with disengaged audiences about the social and ethical implications of genetics.
2. Enhance and evolve societal awareness of genomics and ethics of science globally, including diverse communities.

 

Ordinary people. Extraordinary science.

It is only human to question, to fear, to doubt, to distrust, to hesitate. It’s how we’re built. This is especially true when it comes to the science of human genetics and DNA, with its accompanying myths and monsters of data abuses, Franken-Science, eugenics and historic abuses of whole communities in search of ‘progress’. 

Many communities are alienated by and distrustful of advances in medical science and research, especially those around DNA and genetics. For some, stories of unpleasant lived experiences and historic grievances against the medical and scientific worlds lie very close to the surface, with little required to trigger them. And more broadly, very few of the UK population feel actively connected to science and a third of the British public says they rarely or never talk to their family, friends or colleagues about it. 

Just to make things worse, communication around the topic from the very organisations and institutions tasked with embedding a better and fairer health-care system into society can seem confused, or lacking in relevance or humanity at best, which simply exacerbates the issue.

This leaves us with a situation where the very people in society who could and should be benefiting most from advances in genetic medicines and treatment tend to close off or just reject them out of hand as ‘not for them.’

The outcome? An increasing imbalance in healthcare outcomes and a missed opportunity to impart the knowledge that might empower those communities to make more fully informed decisions when genetics does arise in their lives.

Genetic research, genomic medicine

Genomic medicine (the use of tests to predict, diagnose, treat, and prevent genetic conditions) is sweeping across our healthcare systems. And genetic databases that guide how these tests are interpreted, don’t represent all of society. So there is a social justice issue here – not everyone will reap the benefit of genomic medicine unless everyone has had a chance to discuss, think and reflect on what the science offers, how it is being used and how it should be shaped for the benefit of everyone.

The ultimate aim of the Only Human project is to figure out how to gently lift awareness of genomics across mainstream society, so that if and when people are ready to engage, they feel they have a choice and a voice. Awareness raising starts with good communication – and this has to involve compassion, empathy and a whole lot of listening.

Seeking Solutions

Only Human is an innovative exploratory research project that aims to understand if there are new, creative ways to:

1. evolve societal awareness of genomics
2. start a conversation about genomics
3. explore some of the ethical issues associated with genomics
4. increase confidence in engaging with genomics
5. learn more about what trustworthy science looks like, from the publics’ perspective

And finally, it would be helpful to understand if there are particular framings, tone, metaphor, memes, mechanisms that resonate with broad and specific public audiences. Go to The Feed to see some of the creative assets we’ve already made; you’ll also have a chance to offer your feedback and thus you’ll be offering your voice into the research mix.

Creative Conversations

The Only Human project connects with a myriad of creative partners who will work to the same Insight Framework as described in our Evidence Base.

These experiments will include forays into film, Influencer innovation, gaming, TV programming, fashion and music events amongst others. Each will be evaluated both through qualitative and quantitative measures to provide feedback on how to improve what we’re doing, and also to enable us to know which ones work and which ones don’t. And crucially, we will be exploring which methods work, at scale.