Our research has demonstrated that everyday talk about genomics currently, used by researchers and clinicians alike, has the potential to alienate already disengaged public audiences. We interpret our findings, not in terms of illiteracy about genomics, but as illustrative of the very real socio-historical inequities and inequalities that exist for people from marginalised communities. The conversations about genetics that led with the science and its benefits were triggering for participants, this revealed itself as cynicism and mistrust. And thus continuing to frame our science, only through its benefits, however well-meaning, has the risk of doing harm. The genomics community has an obligation to take heed of the voices represented in this work – not only is this ethically just (and at a minimum, courteous) to care about how one’s language lands with the target audience, but it is also pivotal if the genomics industry wants to embark on conversations with community groups about including them in genetic research, thus diversifying the ancestral and ethnic background of existing datasets.
Scientific racism is an upstream sociological causal factor and a historical fact. And, as demonstrated in our findings, this is an issue that participants articulated directly in response to all of our linguistic framings that led with the benefits of genetics. We neither prompted them for this, nor sought it out, but nevertheless, it was clearly expressed. The enthusiasm of scientists and clinicians to extoll the benefits of genomics, however well intentioned, should be given thoughtful consideration. As our research demonstrates, what we say and what people hear can be worlds apart. Ignorance of the intense emotion about present-day scientific racism is no defence and it is insufficient to claim we are neutral actors – ‘I am simply explaining the benefits of the science!’ when the impact of the genetics research is open to subjective interpretation, positionality, intense debate and sits within the context of misuse.
Our sample included 100 adult participants of mixed ages and self-identified gender, English was the first language for all participants. According to the self-identified socio-demographic data provided (including ethnicity) there were 25 people in each of the following groups : i) Participants who self-identified as being from a Black African background, ii) Participants who self-identified as being from a Black Caribbean background, iii) Participants who self-identified as being from a Pakistani background and iv) a final group of participants of various ethnicities who had lower educational attainment, lower income levels and occupation categories indicative of socio-economic disadvantage.
The results below interpret what language is currently used to communicate genetics and how this is received by the participants in our study.
Current linguistic approaches and why they do not work
| What we currently do | What it involves | Language tested | Why it does not work |
| Lead with scientific benefits | Fails to articulate personal significance | “Your contribution today could be the key to discoveries that can help future generations. And it could live on to change the world as scientists continue to use it into the future.” | “It was very sciency…We want to be cured now. Not in the future or not when we’re dead.” (Participant from the disadvantaged socio-demographic group) |
| Assumes trust that isn’t given | “By looking at the unique set of quirks and glitches in your DNA, scientists can understand a lot about how to give you the best healthcare.” | “Scientists tell us this about COVID, that about COVID. And a lot of the information is ambiguous, and it changes every day…. Just for me, it doesn’t hold any trust and any value.” (Participant from the Black African group) | |
| Lead with health benefits | Fails to acknowledge concerns about historical injustices | “For this research to help everybody, it needs to represent everybody. And that means it needs to include everybody. People from all backgrounds, ethnicities and walks of life. Opting in means more than just saying yes to research. It means saying yes to an equal health care system for all.” | “So, we’ve been used as lab rats, we’ve been used as test dummies. So that’s why we are reluctant.” (Participant self-identifying as from the Black African group) “I heard ‘everybody’; we can all of a sudden help everybody. Okay, so now, what? Are we admitting that there was a point where we weren’t being helped? Even though, let’s talk it as it is, we’ve always known that. We don’t get the same amount of help, or we are not taken seriously. Or, they just ‘okay, it’s sickle cell, they’re black.’” (Participant self-identifying as from the Black Caribbean group) |
| Fails to acknowledge concerns about present day inequalities | “The result is better healthcare for you and others in your community. That means improvements like diagnosing diseases earlier and more accurately, finding better, more personalized treatments, and, ultimately, making sure you get the medical care you deserve.” | “There’s a thing called the postcode lottery … It is personalised care because it’s at a price. So yes, maybe you can have that type of treatment, however, if it’s a cost, where we are within the budget that we have, you might not get it.” (Participant from the disadvantaged socio-demographic group) “If you look at auto-immune disorders that affect black people, they’re never looked at. And black women, they’re most likely to die in childbirth so they’re always overlooked. So now, they’re going to help us, absolute they won’t. That won’t happen.” (Participant self-identifying as from the Black Caribbean group) | |
| Oversimplifies the message | “In your DNA scientists can understand a lot about how to give you the best healthcare” | “I don’t even know if scientists understand DNA fully. From what I know, scientists only know a very small about our DNA and a lot of our DNA is not comprehendible at the moment. So, I think there’s a lot more to be found through science.” (Participant from the disadvantaged socio-demographic group) “A lot of the factors that contribute to our healthcare, perhaps, are driven by the fact that we are, generally, in the UK, less socio- economically well-off than other ethnicities or other racial groups. It doesn’t necessarily mean that us providing our data will necessarily provide better healthcare.” (Participant self-identifying as from the Pakistani group) | |
| Assumes trust that isn’t given | “Using genetic testing, doctors and scientists can effectively Google the wealth of information that’s stored in your DNA…If you choose to have a genetic test, scientists along with several government agencies and non-profit organizations are standing by to answer your questions and make sure you have everything you need to make the right decision for you.” | “I would never, because you just don’t know what they’re really using your information for. Can it be used against you later on? What they’re developing with it? They don’t really communicate things well, in general anyway. So, any type of government access for me would be a no, like I just, no.” (Participant self-identifying as from the Black African group) |
Content and structure of the optimised message
| What we can do | What it involves | Language tested | Why it works |
| Acknowledge doubts and distrust | Validate concerns about past and present injustices | “We know that a lot of people have questions –and even concerns –about giving permission for their genes to be used in research. And studies have shown that, in general, concerns among ethnic minorities can be even greater. And there are real reasons for this. Some are connected to personal experiences and some to historical injustice. These concerns are real.” | “It makes me feel a bit more seen, that they can understand and that they have some appreciation for other points of view…Especially in contrast to [messages], where it was almost good to get as many people to donate, it is a lot more nuanced message that still outlines the benefits.” (Participant self-identifying as from the Black African group) “Acknowledgement that ethnic minority people are very sceptical, acknowledgement that in the past history, that this particular client group has been not treated fairly in regards of treatment for health wise. So, I think acknowledging that, I think that has been positive. So not ignoring the past. (Participant self-identifying as from the Black Caribbean group) |
| Validate doubts due to a lack of familiarity with genomics | “If you’re wondering what genetic testing is all about, you’re not alone. Healthcare can be confusing enough as it is, and it would be surprising if people didn’t have questions about things like DNA testing” | “You can resonate with it because you know, when you asked us at the start all these questions, a lot of us, we really didn’t know anything about it. So it makes you feel more accepted by the fact that you have kind of no knowledge or not very broad knowledge on the subject.” (Participant from the disadvantaged socio-demographic group) | |
| Empower people | Frame it as a voluntary choice | “It is your health, your genes, and your choice.” | “I think it is right. It is my choice. It is almost like there is no pressure, really.” (Participant self-identifying as from the Black African group) |
| Emphasise control where relevant | “The most important thing to know is this: you control whether you share your genetic information with others. One reason to do so is to receive better healthcare. In this case, the results of a genetic test will remain private, just like your other medical records, and only you and your doctor will have access. Another reason is to volunteer to have your genetic information used in research for new treatments. In this case, your genetic information and your medical history is protected in a secure database.” | “I think it’s good that you have a right over it, so it’s not just like they just take it and then you give it to them and they can do whatever they want. You still have your say in it” (Participant from the disadvantaged socio-demographic group) | |
| Calm concerns | Avoid emphasising novelty. Instead, ground genomics in what is familiar | “Today, your doctor can use a simple blood test to uncover a universe of information, like your red blood cell count or your cholesterol. In much the same way, they can look at your genes to get a more complete picture of your health, like your risk for developing certain conditions. Ultimately this extra information means they can make better decisions for you and with you. Genetic testing isn’t a replacement for the tools doctors use today, it’s just one more piece of information that works alongside everything else” | “I thought it was interesting. The part where it said it might be unfamiliar for you to hear about it, it’s just like other tests and the reassurance it’s giving you the best care possible, I think that was quite reassuring and also the fact that it was just saying we just want to improve ways in trying to make your health better.” (Participant self-identifying as from the Black Caribbean group) |
| Build some context around it: be specific about what is and is not involved | “When you put your genetic information into the care of a doctor or a researcher, it still belongs to you and you have a say in how it’s used. That right is protected by several different laws that were created to make sure your data is handled securely and responsibly…The main way the privacy of your data is protected is by restricting who can see it. When you take a genetic test for medical reasons, only members of your care team – like your doctor – can access the results.” | “In a way it was very reassuring, and I think it was the first video that actually talked mostly about the security and mostly about not to get you in some way, but to reassure you and protect your information, and I wish it was something like this from the beginning. I would feel much more reassured and much more secure.” (Participant from the disadvantaged socio-demographic group) “I think that’s one of the questions I probably had in my head, to be honest, throughout this session was whether our identity would be anonymized when it’s going to researchers. So, that’s quite good to know.” (Participant self-identifying as from the Pakistani group) | |
| Introduce benefits after the preparatory work above has been done | Move to personal benefits by articulating the specific relevance for the target audience | “It’s important you get the information you need on why you might –or might not – want to consider opting in to sharing your genetic information to help create better, fairer, and more personalized medicine for you and your family, and families like yours.” “When scientists are able to compare more people from many different backgrounds, they can gather more insights and, over time, help more people.” | “It did mention family a bit and that sounded more like immediate family. I can resonate with that quite deeply to be fair. It’s a bit like it would benefit me, benefit my immediate family, my loved ones around me, and then the future.” (Participant from the disadvantaged socio-demographic group) “People like that, who aren’t rich, middle-class: are they also going to benefit from this? Because at the end of the day, that’s where I came from, to where I am now, and I would like for my import not to be disregarded just because of race or what your class is…So, me helping gather DNA, I would like people from my roots to also benefit from this.” (Participant self-identifying as from the Pakistani group) |
| State concrete, tangible benefits and (where possible) incorporate specific examples | “In the near future, we’ll be able to use a bit of blood or saliva to do a DNA test. The results of this test can mean less guesswork and the ability to diagnose diseases like breast cancer earlier and more accurately. And the more people who share their DNA for researchers to study, the more medicine can be precisely designed to work for you and your family.” | “I like it. I thought it was the strongest out of the ones that we’ve seen so far. They try to appeal to you as an individual. They explained what it was going to be used for. They also dropped in the C word, which most people know somebody or has some kind of connection with that. That kind of makes like your ears prick up more and you pay attention.” (Participant self-identifying as from the Black African group) | |
| Finally, nod at the bigger picture by appealing to wider, collective benefits | “If you do participate, your doctor can spot patterns and learn more about how they affect your health by comparing your genes with people who share a similar heritage. The result is better healthcare for you and others in your community.” | “Well, probably [it was] not [more motivating] for me personally because obviously I’m not a minority ethnic group, although my husband is. Not for me, but it gave me a better feeling about the whole project, maybe. Yes. I’d say it does make me feel a bit more positive about the whole concept of it.” (Participant from the disadvantaged socio-demographic group) |