A new research project is tackling health inequalities affecting black communities across the UK.
The Black Health Legacy project is calling on people from black, black African, and black Caribbean backgrounds to take part in what will become the UK’s largest health database dedicated to black communities.
It is an initiative which could transform the health of future generations.
Professor Sarah Finer, who co-leads the project, said: “There’s really significant under-representation of black, black African, black Caribbean, mixed ethnicity people in research – not just in the UK, but globally, and that is perpetuating a lot of health inequalities.”
Black people and minority ethnic groups have been historically excluded from clinical research and genetic studies.
DNA from white Europeans makes up 86% of global studies, meaning many medicines, treatment plans and tests are standardised for white-European genetic profiles.
Human DNA is 99.9% identical – so only a tiny amount of our DNA differs between people. But because this 0.1% is so large and complex there is a lot of diversity that can occur, which can have wide ranging health effects, from increasing breast cancer risk to protecting against malaria.
Black Health Legacy research focuses on discovering genetic differences that might influence health, but on a larger scale, its focus on a critically underrepresented group is overcoming systemic issues in medical research that have historically prevented equal care.
Last year, Black Health Legacy researchers found one in seven black men carry a genetic change that invalidates the standard diabetes test, which the NHS runs over 50 million times a year.
Professor Finer explained this delays diabetes diagnoses by up to four years, leading to risky complications and poorer health.
The study, led by Queen Mary University of London and University of Exeter with funding from the Wellcome Trust, is using this research as a foundation to continue exploring type two diabetes as well as high blood pressure and kidney disease – conditions which disproportionately affect black communities.
Research facilitator Dr Sean Kassen was encouraged by the response from institutions and communities alike.
He said: “There is an appetite for what we do, and it has been well received within Queen Mary, within other research groups that we’ve partnered with, within the NHS, and also within the communities that we’re reaching out to.”
But even with this appetite for the work, Black Health Legacy researchers said that building trust in communities has been central to the process.
A long history of exclusion and abuse in medical research has led to a loss of faith in research and clinical trial participation.
By working with grassroots charities and black-led organisations across London, the researchers are able to create honest conversations with people about the project and its aims.
Professor Finer said the initial response to the project has been ‘phenomenal’, with 500 people signed up within the first three months.
Bernice Appiah, research facilitator and community engagement lead, explained that while policy change could be a way off, the benefits of the research are already being felt.
Appiah said: “It’s really about continuing to centre the lives of Black people, ensuring that they understand the importance of their health, and continuing to bridge the gap in knowledge for everyone.”
Arming people with the knowledge to advocate for themselves in healthcare settings, she said, is itself a form of progress.
Dr Kassen said: “We are under-represented in health research. We are under-represented in genetic databases.
“We want equal access. We want treatments that work for our people. We want diagnostic tests that work for Black people.
“We are a project that wants to do things from the grassroots and always go back to the communities that have, in some cases, said ‘we’ve been left behind for decades and decades and decades. We are not hard to reach. You just need to know how to reach us.'”
Anyone aged 16 or over and who self-identifies as being Black, Black African, Black Caribbean, Black or Mixed ethnic background that includes Black, Black African or Black Caribbean can get involved in the study. Visit the Black Health Legacy website to find out more.
Featured image: Warren Umoh via Unsplash
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