Table 1.

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 personalized 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 amount 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)