In this piece of work, we collaborated with the language consultants Maslansky to explore the views, attitudes and reactions of members of the public with regards to common approaches and language used to communicate about genomics, with a particular focus on those groups traditionally excluded from or under-represented in genomics research.

Language matters. It plays a vital role in determining how public audiences perceive the relevance of a topic, whether they feel at ease and confident to discuss it, and think discussing it can make a difference. Through a series of focus groups with 100 participants from different ethnicities and walks of life, we explored if there are any differences between ‘what we say’ and ‘what they hear’ when talking about genomics, and what language could work better to connect with these audiences.

HERE IS THE RESEARCH PAPER THAT WAS WRITTEN:

‘The Legacy of Language: What do we say, and what do people hear, when we talk about genomics?’

Anna Middleton, Alessia Costa, Richard Milne, Christine Patch, Lauren Robarts, Keith Yazmir, Sachi Pettit, Tegan Harcourt, Alannah Connolly, Amanda Li, Jacob Cala, Shelby Lake, Anna Dickenson, Kate Orviss, Julian Borra, Simon Wilde, Vivienne Parry

Introduction

As captured by the United Kingdom Department of Health and Social Care “genomics has the potential to transform the future of healthcare by offering patients the very best predictive, preventative and personalised care.” Countries around the world have turned to genomic sequencing to tackle the ever-present threat of another public or global health crisis and the language of genomics has been thrown to the forefront of public discourse. However, many questions still surround how to effectively engage public audiences who emotionally detach as soon as they hear something about science (insert ref), believing ‘this isn’t for me’, ‘I won’t understand it’ or at worst perceiving – ‘the science will be used against me’. 

The largest ever public attitudes survey to document awareness and familiarity with genomics (involving 37,000 people from 22 countries, data gathered in 16 languages) has recently shown that outside of the USA, familiarity with genomics and the data-sharing process that underpins research is very low. This work has also shown a direct relationship between a lack of awareness of genomics, a mistrust of those using genomic data, and a disinclination on the part of the public to participate in research. The groups least likely to be willing to donate genomic data were less likely to have had tertiary education and more likely to be from  a minority ethnic group. More specifically we know that there are particular community groups in the UK who have explicitly expressed mistrust of genetics in various different contexts – for example community groups who self identify as having the following ancestral heritage – Black Caribbean, Black African, Pakistani. 

Outside the specialist world of genomics, none of us really need to understand the technical details around what a variant actually is, the processes of genome sequencing, and the practicalities of data harnessing. However, in order to confidently use and access the tools of genomic medicine, which are available across the entirety of the NHS, some level of familiarity with the implications of this would be of benefit.

The ability to realise the potential benefits provided by genomics are highly dependent upon the ability to communicate with public audiences in ways that are meaningful in everyday life. How we collectively talk about genomics and the language we use is thus of vital importance to avoid alienating the very people our science exists to serve. This is particularly important for actors working in the genomics sphere (whether clinical, research, non-profit or for-profit) who ‘talk about genomics’ with public audiences. This does not necessarily mean promoting or proselytising the potential of genomics, but recognising that ‘genomic talk’ intersects with people’s existing cultural meanings and references, and their hopes and fears related to science and medicine. For those involved in the development of genomic medicine, acknowledging this and working towards a shared approach may mitigate the risk of a negative public response with the potential to derail progress in the implementation of genomics. Language matters and language plays a vital role in determining whether public audiences feel as though the subject is of relevance to them, whether they feel at ease and confident to discuss it, and thus determines how they engage with the field. 

In the work reported here, we aimed to explore the views, attitudes and reactions of members of the public with regards to common approaches used to communicate about genomics, with a particular focus on those groups traditionally excluded from or under-represented in genomics research. The aims were to understand whether there were any differences between ‘what we say and what people hear’ with respect to language around genomics, and what strategies or approaches could be more effective to connect with these audiences. 

Methods

Study design

The study utilised a two-phased approach involving expert consultation and focus groups to test out participants’ views on different approaches used to to communicate about genomics with the general public. The research was commissioned and funded by Wellcome Connecting Science and Genomics England and was designed and delivered by the market research company Maslansky, which specialises in language research strategy. The project has received a favourable ethical review from the Sanger Institute Connecting Science Research Ethics Committee XXXXX (see Appendix 1). 

The initial phase of the study consisted in the development of a series of ‘language stimuli’ (i.e. short messages of around 300 words) designed to capture different approaches that are commonly used to talk about genomics with the public. These were designed by the market research professionals drawing on the expertise of researchers from Wellcome Connecting Science and Genomics England. They included approaches focused on framing and articulating potential benefits of genomics (Why is genomics a good thing?), as well as approaches centred on assuaging potential concerns (Why shouldn’t I be worried about genomics?) (see Appendix 2). 

In the second phase of the study, 100 members of the public took part in a series of sixteen focus groups designed to gather participants’ in-depth responses to the language stimuli. The focus groups were fully designed and delivered by the market research professionals. The first six focus groups (n=34 participants) were conducted in June 2021. Preliminary analysis was conducted and additional ten focus groups (n=66 participants) were carried out in December that year to further test the nuances of the messages and differences between target audiences’ response with a larger sample. All focus groups were filmed to capture non-verbal clues and for dissemination purposes.

Participants details

Participants were self-selected members of the market research company panel. Members of the panel were invited to take part in an online questionnaire to screen for an upcoming study on an undisclosed topic. We aimed to recruit four groups of members of the British public: i) those self-identifying their ethnicity as Black African, ii) Black Caribbean, iii) Pakistani and iv) a final group of participants from socio-economically disadvantaged backgrounds. Eligibility criteria included: i) socio-demographic details (i.e. being part of one of the four target groups); ii) limited familiarity with genomics; iii) lack of direct experience of genomics through either having a genetic disorder in the family or having taken part in genetic testing. 

Prospective participants were screened based on self-reported data on ethnicity, educational attainment, employment status and occupation. Sampling criteria were not disclosed and participants were not informed of the categorisations used at this stage. Familiarity with genomics was self-reported using a scale from 0 to 5 (prospective participants who scored 4-5 were excluded). To avoid the self-selection of prospective participants who might have strong views on the topic, questions on genomics were part of a broader range of science-related topics, including Covid, climate change and artificial intelligence. Sampling and recruitment was undertaken by the market research company. All participants provided written consent to take part in the study, to their focus groups being filmed and for the filmed footage (including a visual image of the participant) being shared on a publicly available platform such as YouTube so that the results of the study could be disseminated widely  (see details in Appendix 3).  

Data collection and analysis

The filmed focus groups were conducted on-line using Zoom and each session lasted approximately two hours. At the beginning of each session, participants were asked their views and concerns (if they were present) on genomics using a semi-structured guide. Once the topic had been introduced, they were shown a series of videos of an actor reading selected language stimuli. Using a methodology called Resonance Dial Testing, participants were invited to use a dial to capture moment-by-moment reactions to the messages in real time. The 0 to 100 dial was centred at 50 at the start of each video, and participants were encouraged to continuously use the full range of the dial to rate specific passages, words and analogies based on their gut feeling and immediate reactions. Each video was then followed by open-ended questions and group discussion to further explore the reasoning behind participants’ responses. The present analysis focuses on this qualitative data. 

The actor reading the language stimuli was a Black British woman, selected to fit with the target audience. The actor was asked to talk in as neutral a tone as possible so as not to imply agreement/disagreement with any of the concepts in the script she was following. The  background and clothing of the actor were kept as neutral as possible, so the audience could focus on what she was saying. The language stimuli were selected to include messages from both groupings during each session.  The messages used in the first round of focus groups were randomly selected. In the second wave of focus groups, feedback from the completed sessions was used to refine the selection of messages. 

All sessions were fully filmed and transcribed. The content of the group discussion was first analysed by market research professionals and preliminary insights were shared with the researchers. Videos and the anonymised transcripts were also shared with the research who independently coded the transcripts and analysed them following established principles of thematic analysis (insert ref – Braun and Clarke 2006). 

Results

What members of the public think when they think of genomics 

Meanings and associations

Participants’ initial response about genomics could be grouped around three main themes.

i) Applications of genomic science. Health applications were commonly cited, indicating participants drew intuitive and spontaneous connections between genomics and health. Exactly how genomics might contribute to medicine and health care, however, often remain nebulous. Other applications cited included forensic science, gene editing, cloning, and Covid-19. Actual or possible uses of genomics that were more controversial and/or prominent in public imagination (e.g. crime, cloning) attracted more attention, while uses that were perceived as more innocuous and/or mundane (e.g. recreational testing) were less frequently mentioned. 

ii) Identity. For many participants genomics was about personal identity and belonging. They defined genomics and related concepts (such as genetics and DNA) as that which ‘makes you you’. They also frequently associated it with ideas of ‘family’ and ‘heritage’ .

iii) Science. Finally, for some participants genomics evoked associations with science and biology. This meaning was often associated with more technical terms, such as concepts of genes, cells, DNA, and with reference to formal scientific education.

Concerns

Participants also expressed a wide range of concerns. The most commonly cited type of concern related to privacy and the misuse of personal data.  Other concerns related to specific applications of genomics,particularly high-profile ones such as cloning, gene editing. Participants also expressed reservations about the use of genomic technologies for enhancement and the risk of discrimination. Others voiced fears of unspecified future unknowns. Finally, the use of genomics in healthcare raised concerns around the balance between harms and benefits, the risk of overtreatment and the over-reliance on genomic information. 

What they hear: why common approaches to talking genomics do not work

Science

A first approach tested through the language stimuli was centred on science. Even if a number of participants intuitively associated genomics with science, this approach was largely perceived as unrelatable. A number of participants expressed distrust about scientific research (see more below). The recent experience of the Covid-19 pandemic also coloured participants’ attitudes towards science, with some participants expressing the view that science is subject to disagreement and cannot be trusted . 

Even when not overtly critical of science, participants’ responses indicated a general disinterest in the scientific aspects and implications of genomics (e.g. “It doesn’t speak to me”). Even when they spontaneously mentioned science, they tended to give short and at times vague answers,n contrast with the more elaborate descriptions they offered when talking, for example, about identity or the possible applications of genomics., 

Benefits

A second approach tested focused on potential benefits. These felt more tangible and relatable than the scientific aspects of science.However, an approach that led with benefits was perceived as disingenuous and met with scepticism. There were three main reasons why this was so. 

First, participants felt the promised benefits were “too good to be true”. Specifically, they highlighted  the limitations of current knowledge of the genome; the long and uncertain process to translate scientific discoveries into actual benefits; the lack of resources presumably needed to deliver genomic/personalised medicine; and the importance of wider determinants of health. As a result, messages that appeared to over-promise or over-simplify potential benefits were  compared to a “sale pitch” filled with “buzzwords”. They were perceived as “unrealistic” and even “deceitful”: 

When I’m seeing certain words, it’s going to make that message sort of shut down and make a bit of a lie, a bit of a deceit. It felt very sort of, ‘oh, this is nice’, sort of thing, but… I don’t know. 

Second, participants expressed a lack of trust in those who should deliver benefits, including government, private companies with a commercial interest, but also researchers, regulatory bodies and even the health care system. While the reasons behind the lack of trust in each of these actors might be different, the effect was similar in that it made participants suspicious of declared intentions, including claims about possible benefits from genomic research:

“The government can be deceitful and have their own agenda. They might have ulterior motives.”

Finally, leading with benefits raised the question of “who benefits”, i.e. who will benefit the most, and who will be left behind. Concerns about these questions meant that even when future benefits were considered credible, participants had no faith these would be equitably shared. Participants  were particularly  suspicious of the claim that genomic research was going to be for “everybody”:

“The word ‘everyone’ made me laugh. We weren’t included before and we won’t be now”

It is worth noting that overall, participants expressed support towards the idea of ‘altruistic’ donation and some said to be personally motivated by the prospect of helping others, including those beyond their immediate family/community, as well as future generations. However, they did not believe that any benefits derived from their participation in genomic research would lead to equitable benefits for all. 

• Participants from Black African and Caribbean backgrounds often cited historical injustices as a reason for concern. Many mentioned specific instances of how medical research historically failed their communities, from high-profile cases such as Henrietta Lacks, to the problem of diversity in clinical trials and the lack of research and funding for diseases with a higher prevalence among certain groups: 

“So we’ve been used as lab rats, we’ve been used as test dummies. So that’s why we are reluctant.”

• Systemic racism was also discussed in the context of present-day injustices, including with regards to access to healthcare. 

• Participants from a Pakistani background were less likely to mention historical injustices as their main concern. Still, they did express concerns about present day injustices, including the intersections of racism and other forms of inequality:

“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. Getting access to healthcare in certain areas which have a large demographic of minorities is difficult enough as it is, because they’re disadvantaged, they’re impoverished. They don’t have the same scale as Chelsea and Westminster, for instance. You won’t find that in Bradford East, for instance. There’s a lot of factors that play into it, and I think they’re oversimplifying it a little bit.” 

• Participants from all groups raised concerns about the cost of genomic testing for both individual and health care systems, and the impact on equity in access. Some worried they might not be able to afford it: 

“I think it’s a personal package somebody’s trying to sell here, because when you look at it, it says it’s going to be more precise, it’s going to be personalised. Now when you talk about personalised, it’s individual. So, what you are actually trying to say or sell? Can you have five people in a family all having a different package, and how much of this is going to cost us?”

Even when delivered via the NHS, the promise of high end technological advancements and ‘personalised’ care was not perceived as credible in a context of strained resources and unequal access: 

For me, it’s a benefit that you could detect a disease early and treat it, however, there’s a thing called the postcode lottery…So, for me, it’s yes, there’s the buzz word that somebody’s mentioned, personalised care, but 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. 

As a result, an approach that led with benefits was perceived as disingenuous and could exacerbate distrust. Many participants felt this approach placed undue pressure on them to take part. Some described it as “manipulative” and even “coercive”, especially when emphasising benefits for ‘everybody’:

“It’s just emotional blackmail: for the greater good, for everybody.”

“Obviously, I think overall, it sounds good when you hear it, because you think that, “All right. I’m going to have access to the best medical treatment.” But it’s a bit of a double-edged sword, because at the same time, it’s being used as a bit of a brainwashing tool to make you feel that, “All right I have to do this. If I’m not taking place in it, then I’m not helping towards this grand scheme of medical healthcare, et cetera.” I think it’s a bit of a brainwasher.”

What could work 

Because of the issues discussed above, if we want to connect with the target audiences we need to start somewhere else and organise the discussion in a different way. 

Content and structure of the message

What can we do?	What does this involve?	What language works?	Why does it work?
Acknowledge and validate doubts and distrust.	Validate concerns related to past and present injustices. This resonated in particular with participants from Black African and Caribbean backgrounds.	“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. Which I thought was good. Or at least concerns that people might have…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.”
Validate doubts due to a lack of familiarity with genomics.	[to complete from below]
Do not amplify concerns.
Empower	Emphasise voluntary choice
Make clear that they can also decide not to take part.
Use language that emphasises active participation (e.g. “opt in”) instead of passive acceptance
Reassure and calm concerns	Grounding genomics in what is familiar
Lead with personal benefits
Nod to the bigger picture	[no more detail currently on this?]

1. Acknowledge and validate doubts and distrust. 

Opening the conversation by acknowledging doubts and concerns could be effective. It may make people feel heard and show we are open to meet them where they are. Here, participants appreciate messages that: 

• Validate concerns related to past and present injustices. This resonated in particular with participants from Black African and Caribbean backgrounds.

Language tested: 

“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.”

Why it could work: 

“It makes me feel a bit more seen, that they can understand and that they have some appreciation for other points of view. Which I thought was good. Or at least concerns that people might have…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.”

However, the message, in particular the line on ‘historical injustice’, received mixed responses in other groups. Some Pakistani participants, as mentioned, did not consider historical injustices as a primary issue of concern, and felt it applied more to older generations. Some participants in the socio-economic group rated the message positively, while others felt it did not apply to them. 

• Validate doubts due to a lack of familiarity with genomics. 

Language tested: 

“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”

Why it might work:

“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.”

• Do not amplify concerns. Messages that focused on concerns about privacy (2.4. and 2.5) raised ambivalent feelings in some participants. These participants appreciated the reassurance but also found that the message made them more aware of possible reasons for concern. 

“It left me a bit sceptical of it. It’s tricky because they’ve mentioned it and it’s made me sceptical of it!” (7)

There are many reasons why this could be, including the topic itself. However, the responses also indicate that language itself may play a part. Compared to messages that gave people permission to be doubtful, these messages automatically framed the issue as a sensitive one and even mentioned examples of how things could go wrong, thus unintentionally heightening participants’ scepticism.

2. Empower people. Participants reacted positively to messages that put them in control and emphasised voluntary choice. Strategies that were effective in conveying a sense of empowerment included: 

• Emphasise voluntary choice:

“[I like it] because it’s giving us the choice. I feel like, especially these days, a lot of our choices have been stripped from us with regards to our own health and how we live our lives, so at least overall whatever information that we can get from it, it’s our choice to choose what would be best for us in the end.” (3)

However, the concept of ‘choice’ can also be easily misinterpreted in the context of discussing the potential benefits of genomics. A number of participants thus appeared to confuse the choice to participate in genomic research with the choice(s) that genomic information might enable them to make with regards to their health. Clarity on this point is key as over-emphasizing benefits might not always be appropriate and, ase seen, could raise scepticism. 

• Make clear that they can also decide not to take part. This resonated positively with participants as it served to reassure the concerns and anxieties some expressed about being pressured to take part or being discriminated against if they did not. 

• Use language that emphasises active participation (e.g. “opt in”) instead of passive acceptance (e.g. “allowing research”) as it helps convey a sense of agency in the decision-making process (see more below).

3. Reassure and calm concerns

Addressing possible concerns before moving on to discuss potential benefits can help to assuage unpleasant feelings and lay the ground for a more productive conversation. 

• Grounding genomics in what is familiar can help the audience to envision what they might expect. It also emphasises continuity and similarities with the present, rather than radical breakthroughs, thus minimising the novelty and exceptionality of genomic testing. 

Language tested: 

“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”

Why it might work: 

“It just makes the procedure feel a lot more familiar. You are not in a lab somewhere and someone has got a million different syringes. It is just going to be… The other thing that they said is that it is just going to be another addition to the tools that doctors or medical professionals use. It is not like this is suddenly going to overtake everything and all of the personal relationships that you have with doctors, nurses, etc. All of that, which obviously still has value, that is not going away.”

4. Lead with personal benefits

Highlighting benefits is essential for the message to register as meaningful and important.

Given participants’ concerns about lack of fairness and equity, leading with personal benefits is more likely to be effective:

“I think that is something you do need to mention because it is going to be the questions that we ask. Maybe not publicly, but at least questions that will be asked within our own circles. To put it very bluntly, is this going to be for a white lady in the Hamptons or is this going to be for (Ollu? 01:54:45) from Croydon? Who are two completely different people. We just have different mindsets. That is the bit where I feel like that is a part of our story. If we don’t talk about it and we try to brush it under the rug like it doesn’t exist, I think we miss a lot there. Those are my thoughts.”

5. Nod to the bigger picture

Once the personal relevance to the audiences has been clarified, the appeal to wider collective benefits can be further motivating. 

Words and metaphors

Even when they are equally accurate, different words and analogies can evoke different feelings. It is not the case that certain words are better or worse than others, but they might be more or less appropriate to convey certain messages, in certain contexts, and with certain audiences. Some of the words tested included:  

1. Genome/DNA/Gene

The first two have a more scientific connotation. Genome in particular might be quite technical and obscure. DNA is more familiar, but still has a strong association with science and can turn off more disinterested or sceptical audiences. Gene is a more familiar word for many. What more, it is closely associated with concepts of identity, family and heritage (“it’s in your genes”) so it raises less concerns for more sceptical audiences. 

2. Gifting/Sharing/Allowing/Opting in

The first two have a more definitive connotation and can suggest that, once participants opt in, they lose control over their data. These options, like allowing, also have a more passive connotation. The language of opting in (and out) emphasises active participation is therefore ideal when we want to discuss data sharing as a voluntary choice.

3. Glitches/Variations in genes/Similarities and differences

The first was perceived as more scientific and potentially cold when used to denote unique personal characteristics. The phrasing ‘variations in genes’ was preferred because it was more plain and neutral. ‘Similarities and differences’ was also effective. However, leaning too much on the differences could be perceived as negative and “dividing”.

4. Researchers/Scientists/Doctors

Doctors were the ones who inspired more trust, whereas researchers and scientists could be perceived as less relatable figures and raise alarm bells for more sceptical participants. However, scientists and researchers were perceived as highly specialised and competent figures, in a way that doctors were not. 

5. Personalised/Precise/Tailor-Made

The first is often used and can be  familiar to many. It is an appealing idea that speaks to what participants want about healthcare. However, it can also feel quite abstract and generic. For some, as seen, it might be associated with private, and therefore, expensive care. Precise and tailor-made have a greater explanatory power. Precise in particular signals accuracy and efficacy. 

Challenges 

1. Genuine inclusivity requires not only deep consideration, but also if it is achieved, thought needs to be given to how it is framed. 

• Participants responded positively to messages that spoke directly to their experiences and concerns. When identifying the target audience, participants from Balck African and Caribbean backgrounds expressed a preference for specific language (e.g. Black), as opposed to more generic wording (e.g. ‘ethnic minorities’). The more specific language reflected better the way people self-identify, using a different terminology could be perceived as a failure to recognise the community on their own terms: 

“Even if you go back to Black Lives Matter, why are we so uncomfortable with using the terminology Black? Maybe had they said Ethnic Minorities Matter maybe they wouldn’t have felt so bad about it? Do you understand the point I’m trying to make? At the end of the day, if we’re trying to address people of colour, or if you’re trying to address Asian, if you’re trying to address Black, just say it. Just say what we are…”

• If not appropriately framed, however, zooming in on a particular group could also make participants feel ‘targeted’ as if they were the ‘problem’:

“I’m feeling like it’s just like getting pinpointed”

• When addressing communities that have been traditionally marginalised, this approach could be perceived as patronising or stigmatising. One participant comment:

“They keep on going on about certain communities or certain communities that might be reluctant to take COVID vaccines or treatments. It’s all good and well they keep on saying that, but they don’t look at the reasons behind why there might be a distrust or reservations with certain communities.” (Pakistani group)

• Messages that exclusively address one particular group could also be perceived as irrelevant by those who do not self-identify as part of the target audience: 

“The minority bit was not really relevant to me, so I didn’t have any reaction to it to be honest.” 

• It is important to consider that these categories are neither fixed nor mutually exclusive, and can change depending on context. For example, one participant from a non-White background in the socio-economic group expressed the following comment regarding the video addressing ethnic minority audiences: 

“I think putting that in the generic message doesn’t necessarily help, because it makes me feel side-lined. But I do believe that when they are trying to encourage people from certain communities to donate, that you can go about that in a different way. But I think it feels like I’m being side-lined in… And I consider myself British, but it still feels like I’m being side-lined all of a sudden.”

• Finally, not all categories are experienced, embodied and spoken about in the same way. Ethnicity is a visible characteristic, meaning that participants from ethnic minority backgrounds could easily identify themselves as belonging to a group with shared experiences and a concerns: 

“So obviously we’re all black, but I guess the elephant in the room is about sort of the mis-justice that black and other ethnic minorities and things like that faced.” (3) 

In contrast to that, socio-economic status is not necessarily a visible characteristic. Participants in the socio-economic groups did not appear to identify themselves as belonging to a social class or group, or at least they did not speak about this. 

These issues suggest that: i) language needs to identify clearly the target audience; ii) different strategies might be needed to connect with different audiences and articulate the personal relevance of the messages to them; iii) balance is desirable between targeting specific audiences and highlighting shared commonalities might help to o avoid specific that certain groups feel singled out or left behind.

2. Avoid vagueness

Vagueness invites scepticism. When the content was too thin on specific details, or the language was too generic and ambiguous, the whole message was perceived to lack transparency. This could colour participants’ judgement and create room for doubts and scepticism. Specific strategies to prevent this include: 

• Build some context around it. The more distant or elusive the technology, the more likely it is to raise fears and doubts. Where the lack of familiarity with genomics can heighten concerns, providing context can help to take the edge off the discussion and facilitate the audience to form a realistic idea of what testing might or might not involve. Specific issues cited by participants included: 

• How the data is going to be used. As mentioned, privacy and data misuse were among the main concerns cited by participants. Given the high levels of distrust, speaking of laws and regulations might only go so far in reassuring people. Transparency about how data will be used, and what control participants have, is more likely to be effective:

“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.” (16)

• Who is involved. Because of general distrust, this is a sensitive question; however silence on this matter can raise further questions. [can expand on who is more trusted if we want]. The notion of partnerships and collaboration also requires careful framing; the more actors are involved, the more people the audience is required to trust. Giving prominence to a limited number of trusted actors is more likely to be effective. Emphasising that people have control over who they decide to share data with can also be reassuring.

• Regulations. While regulations alone will not be enough to inspire trust, knowing that data use is strictly regulated can still be reassuring for some participants.

• What it won’t do. Some of the applications of genomics most prominent in the public imagination are also the most controversial (e.g. cloning, gene editing, etc.). Clarifying the distinction between medical applications and these other uses can help to anticipate and calm potential concerns that might easily arise when people hear about ‘genomics’ and ‘genetics’. 

“Some people might look into that and be a bit sceptical about how it’s being used and what they’re going to do with it. So, just a bit of information on that, just so it’s reassuring people that it wouldn’t go into something like cloning. Just how it would be used.” (16)

• Avoid generic formulations of benefits. These might be perceived as lacking credibility and fail to register with participants. 

Language to avoid: 

“Better medical care might just lie within you. That means better medicine, better ways to figure out what’s wrong, and better ways to find the right treatment…It can help you and your family get healthcare that’s more precise, personalised, and just better.”

Why it does not work:

“I think I would need to know more because healthcare is just a bit more nuanced than just saying ‘better’, in my opinion.”

“I don’t know it’s just because she was using the word better repetitively sounded very repetitive and better it’s a bit vague the word” (10)

“That’s a really good statement until the end when it said, just ‘better’. That’s what made it all vague. [laughs] Because that was actually bang on. But just ‘better’ – what? Did they run out of language skills? What happened at that point where it was just a case of being nondescript?” (11)

• Instead, state tangible, easy-to-remember examples of health-related benefits. As mentioned at the beginning of this report, participants intuitively identified a series of health-related benefits associated with genomics, including more timely and precise diagnosis, care that is specifically tailored to them and improvements in prevention and treatment. Using these examples can help participants to form a concrete idea of how genomics might benefit them. Because a statement is perceived to be more likely when it is easier to imagine, this can make the whole message more impactful.

• Incorporate (where relevant) examples of specific conditions participants intuitively associate with genomics. Again, this can reduce ambiguity and make the messages easier to remember, meaning participants are more likely to be able to imagine how genomics might lead to concrete benefits: 

“Speaking of the Covid trials now for a vaccine, it was pretty obvious that they needed to do that in order to trial the different vaccines that were being created. But for this, is it for specific illness or is it across the board or is it genetic learning disabilities? Alzheimer’s, like we were saying, dementia, early onset. All those kind of things. I’d just be curious exactly what it was being used for.” (13)

• However, some benefits might be easier to imagine than others. For example, while many participants identified health-benefits, how exactly these could be translated equitably to all was not intuitively obvious. Here, articulating exactly how these will be achieved can reduce guesswork and make the message more immediately relatable: 

“What I think may have improved it is to understand how getting anything from me physically translates into better healthcare. It sounded like a great sales pitch, but it didn’t really tell me how we would get from Point A to Point B.” (11) 

This might be particularly relevant when talking about the relevance of genomics to specific groups. While the possibility of generic health benefits was intuitively understandable, questions related to the lack of diversity in genomics research and what this would mean for fairer and more equitable benefit sharing might require further explanation.

Discussion

Stakeholder and public engagement are “widely lauded as an important methodology for improving clinical, scientific, and public health policy decision-making.” Without active and continued public engagement in the field of genomics, its potential to protect public and population health will remain unfulfilled.^, Furthermore, as genomic medicine becomes increasingly available, asymmetric uptake may serve to further increase health inequalities.

The UK has a vibrant genomics ecosystem and many communications and public engagement strategies are already in place. However, a step-change is needed to reach beyond those audiences who have ‘voted with their feet’ by choosing to read a science news story or attend an engagement event. In common with wider science engagement programmes, genomics engagement has often largely relied on the audience already having some level of interest in, connection to, or knowledge of genomics, something that often relies on high prior ‘science capital’. As a result, existing engagement strategies are hindered from fostering broad public awareness and trust in genomics because by their very nature, they will never reach audiences who are currently very disengaged and may, in fact, exclude them. 

By definition, those who are actively disengaged are the ‘hardest to reach’ public group for science engagement activities. They may also be most likely to resist  as they have no prior desire to engage. However, if some familiarity with genomics is necessary to realise its clinical and public health benefits,  failure to connect with such disconnected audiences may significantly limit the possibilities for the field. 

Limitations

• Focus group method: asking participants views of a topic they do not have direct experience of/time or support to familiarise themselves with. This was not an issue as we were interested in participants ‘gut responses’.
• The format of the focus group might not allow the same degree of confidentiality as one to one interviews, which in turn might affect some participants’ capacity or willingness to respond, particularly on more sensitive topics. However, in this context it offered us the advantage of facilitating discussion on a topic some might not have felt confident discussing given the limited existing knowledge.  
• Sampling methods: heterogeneous characteristics. This was not an issue as we were not primarily interested in comparing groups but scoping out different attitudes with relevant audiences. 
• However, the categories themselves were not all equal (ethnicity is visible, socio-economic status is not). This could shape how participants understood their own positionality in the study (e.g. as a Black member of the public vs as a generic member of the public), and the relevance of this to the topic under investigation. The issue of systemic racism was also prominent in the public discourse at the time when the focus groups were conducted (e.g. many participants mentioned the Black Lives Matter movement). This could sensitise participants to the relevance of the issue to the topic discussed and provide the language and framework to discuss the issue. Other forms of inequalities, and the relevance to genomics, remain more difficult to articulate. 

Acknowledgements

The authors are grateful to all participants who took part in the focus groups for their time and feedback. The authors would also like to thank Public Policy Projects (PPP) for convening a series of roundtables, funded by Wellcome Sanger Institute, Wellcome Connecting Science and PPP to coincide with the G7 in 2021. The purpose of these roundtables was to raise awareness and seek counsel from the ambassadorial network connected to the G7 in relation to how to engage with disengaged communities around genomics. The authors extend their gratitude to Wellcome Connecting Science (insert grant number) and Genomics England for commissioning Ketchum and Maslansky to deliver the public scoping research that formed the basis of this publication and for funding all of the staff time to work on this project; and to the Kavli Centre for Ethics, Science and the Public (insert grant number) for supporting AM and RM to contribute to this work. 

Appendixes

Appendix 1. Study procedures and ethical issues

The project has received a favourable ethical review from the Sanger Institute Connecting Science Research Ethics Committee XXXXX. The research was commissioned and funded by Wellcome Connecting Science and Genomics England and was designed and delivered by Maslansky. Maslansky subcontracted the Schlesinger Group market research company who did the consenting, recruiting and delivered the focus groups. Schesinger is a member of the UK Market Research Society- a voluntary regulatory body that provides governance for the ethical practice of academics working in market research. The industry standard for global social sciences public attitudes research delivered by market research companies is available at:

https://www.schlesingergroup.com/en/company/purpose/.

Wellcome Connecting Science and Genomics England accept that the governance processes are robust enough within the way Schlesinger operates to feel confident that the consent conversation with potential participants was appropriate and meets academic standards. Under GDPR, Schesinger acted as the data controller for the recruitment and conduct of the study. The researchers at Wellcome Connecting Science had no direct contact with any of the research participants and cannot identify anyone to withdraw them from the study and/or film. However, even though participants have given their consent for their visual image to be shared publicly and are aware that by virtue of this, it is difficult to be able to withdraw, we do make the offer of blurring their image if they contact us. If after seeing the outputs from the research, they change their mind about their visual image continuing to be publicly available, they can contact Wellcome Connecting Science and we will retract the publicly available films that we hold and blur the image of participants who identify themselves to us. 

Appendix 2. Language stimuli tested

Group 1: Articulating benefits and value of genomics (Why is genomics a good thing?)

1.1 Collective benefits: It’s good for all us 

Your genes can help guide the way in our search for better health for all. The secret is in our precious DNA, the microscopic code of life. The magic lies in genomics, the field of science that explores and helps us understand the tiny differences between us. For example, there are people who exercise their whole lives and eat a healthy diet, but die of a heart attack at 40. And then there are people who never exercise and eat unhealthy food, but live to be 100. By studying what makes individuals like you and me our unique selves, scientists can learn more about our health and discover new ways to treat and cure disease for everybody. The more of us who feel okay about allowing our DNA to be studied, the better healthcare will be for everyone. When scientists are able to compare more people from many different backgrounds, they can gather more insights and over time help more people. Answers to better health, much like the genome itself, lie within all of us.

1.4 Collective benefits: Levelling up the playfield 

You can help level the playing field and health and wellbeing. While everyone deserves the best healthcare, we don’t always get treated the same. Sometimes it’s about where you live or how much money you have, but it can also be about whether medical research has focused enough on people from a similar background as you. Our genes can be the key to how we ensure we are all provided for, equally and fairly. By comparing your genes with those of other people who share a similar heritage, researchers can spot patterns and learn more about how they affect your health. 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 personalised treatments and ultimately, making sure you get the medical care you deserve. 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 healthcare system for all. 

1.2 Personal benefits: It’s good for me 

Better medical care might just lie within you. That means better medicine, better ways to figure out what’s wrong, and better ways to find the right treatment. And it’s all possible thanks to the special chemical code you carry inside. About 99.8% of your DNA is the same as other people’s, but the 0.2% that’s different is what makes you, you. 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. 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. Your DNA does more than just make you unique. It can help you and your family get healthcare that’s more precise, personalised, and just better. 

1.3 Personal benefits: My contribution lives on

Your genetic code holds the answers to future medical discoveries. That’s because your DNA is more than just a record of where you came from, or instructions for how you grow and develop. It’s how you pass on a piece of yourself for generations to come and how you can leave your mark on medical research now, and into the future. Genetics research has already changed the way we diagnose and treat diseases like cancer, diabetes, and heart disease, but we’re just at the beginning of what’s possible. The more genetic data we look at, the more we learn. And the more we learn, the closer we get to treatments that get to the root problems of sickness and disease. 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. So when you think about what kind of mark you leave on this world, remember the smallest thing you have to offer can actually leave a big legacy. 

1.5 Scientific benefits: You can be part of fighting disease

It’s easier than we think to save a life. Every day, we each do our bit to make things a little better for those around us – in the last year more so than ever. From helping out a neighbor to donating food or time, doing our part just feels good. It costs us little and the world is better for it. Now, we can all do our bit to improve healthcare, too. When people are having NHS care, they will be asked if they want to help others by gifting their DNA for research. More and more people are weighing this up. When millions and millions of different people donate their DNA, scientists can learn more about how to stop life-threatening diseases and crippling conditions. Each person who gives their DNA becomes part of a quest for cures and new treatments for diseases like heart disease and diabetes. Becoming a DNA donor is about more than just donating your DNA – it’s helping with critically important research that could give someone a second shot at life.

1.6 Scientific benefits: It’s key to better health

Britons can shape the future of medical care with our DNA, and we’re doing it by unlocking the clues and signs inside the tiny bits of data that make us all who we are, our genes. In fact, the NHS is on track to become the world’s first health system to look at our genes as part of routine healthcare. This means we are on track to be among the first worldwide to benefit from these advancements. DNA is a molecule that contains our unique genetic code. Like a recipe book, it holds the instruction for making all the proteins in our bodies. When we share the DNA we were born with, doctors can uncover information they can use to provide better care for both ourselves and others in the future. For example, genetic testing can help anticipate and reduce the risk for certain diseases and disorders before they ever develop. Together, we have the potential to make this vision a reality for all people who live in the UK and in the process, we can help millions accelerate research for cures and transform healthcare for the world.

Group 2: Assuaging fears and concerns (Why shouldn’t I be worried about genomics?)

2.1 Questions and concerns: it is your choice

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. Using genetic testing, doctors and scientists can effectively Google the wealth of information that’s stored in your DNA. That means they can access unique information about your health that helps them answer important questions like your risk for certain disorders or inherited conditions, or what kinds of treatments might work best for you. If you choose to have a genetic test, scientists along with several government agencies and nonprofit organisations are standing by to answer your questions and make sure you have everything you need to make the right decision for you. At the end of the day, you’re the only one who can decide what’s best for you and your family. And you have the right to all the information you need to make the best choices for you.

2.2 What is not: it predicts but doesn’t determine your health

It predicts, but doesn’t determine [WHAT IT’S NOT] Our DNA can tell us a lot, but it can’t tell us everything. Studying it can get us a step closer to some answers, but it’s not a crystal ball. In fact, our DNA is just one of many things that affects who we are and who we’ll become. Each of us has a unique combination of DNA, called our genome. Our genomes contain all of the information needed to build us and allow us to grow and develop. But while your genome can help make predictions, it can’t tell you for sure what will happen in the future. And there are lots of things it can’t tell you at all – like what your personality is, who you’ll fall in love with, or even the exact colour of your skin. Studying our genomes can be a powerful way to help us make better decisions about our health. But the information we learn can only help us predict – not determine – the future. 

2.3. What is not: minimising exceptionality 

DNA tests might seem like science fiction, but they’re actually quite unremarkable. You might’ve been anxious about having your first blood test, but now it likely feels like a routine part of any doctor’s visit. The same can be said for genetic testing. While it might be unfamiliar when you first heard about it, it’s actually just like other tests doctors use to give you the best care possible. 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 [inaudible 00:34:30] 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, allowing your doctor to make the best decisions possible for your current and future health

2.4 Privacy: You have control over how your data is used

In our connected world, we share scores of data about ourselves every day, but few pieces of data are as precious and personal as your genetic information, so it’s critically important that you’re in control of how it’s used. 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. Scientists from universities and pharmaceutical companies, then request to use this information for research into medicine that help people live healthier lives. If you ever decide you don’t want more information to be used anymore, you have the right to request that it be erased. When thinking about whether to share your genetic information, just remember, it’s your health, it’s your genome, it’s your choice

2.5 Privacy: Governance and regulations 

For as much personal data as we share every day, securing, it may not always be our top priority, but when you make the important decision to share your genetic data for research purposes, you deserve to know about all the legal protections in place to secure it. When you put your genetic information and so the power 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. And these laws insist on the best security, using systems more secure than at most banks. The main way the privacy of your data is protected is by restricting who can see it. When you take a genetic tests for medical reasons, only members of your care team, like your doctor, can access the results. And if you consent for your genetic data to be used for medical research, your identifying information is removed before your data is ever available to use in research.

2.6 Questions and concerns (specifically targeting ethnic minority audiences) 

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’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 personalised medicine for you and your family, and families like yours. Understanding our genetics can mean better understanding our health. But the first thing to know about genetic research is that it’s up to you whether to participate. It’s your health, your genes, and your choice. 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. That means improvements like diagnosing diseases earlier and more accurately, finding better, more precise treatments, and, ultimately, making sure you get the medical care you deserve. This is one way of making healthcare more fair for you.

Appendix 3. Consent form Delivered by Maslansky

• I understand that a video recording of the zoom focus group will be made, sent and stored by our academic partners at Wellcome Connecting Science, Wellcome Genome Campus, Cambridge, UK. 
• I understand that clips and written transcripts from my video will be used to demonstrate particular points I make, these will be publicly available for anyone to see on a public facing website or academic presentation.
• I understand that video containing my visual image, but not my name or any other identifying information, will be stored and uploaded onto a video sharing platform such as YouTube or Vimeo, and thus be publicly available for anyone around the world to view.
• I understand that, due to the video recordings and written transcripts being publicly available for viewing, I understand that they may be downloaded by people unconnected to the research and so it is not possible to withdraw or permanently delete them. 
• The recordings and written transcripts of the full sessions, which will not include names or other identifying information, will be used in academic presentations, as multimedia attachments to academic papers, and used by both Wellcome and Genomics England in presentations that may be recorded. The main audiences will be academic and related groups, charities, think tanks and commercial audiences in the context of genomics education and awareness raising.