Addressing health inequalities

The UK has a richly diverse population, with almost 20% of people identifying with a non-white ethnicity in the last census. Numerous studies have shown that ethnic diversity is hugely beneficial to population health and leads to greater social cohesion and better health outcomes for individuals. But despite this, there are still entrenched health inequalities between the UK's white population and minority ethnic groups, with minority patients often experiencing worse outcomes than their white counterparts.

Racism and discrimination undoubtedly form a part of this problem but the origin of these inequalities is a hugely complex intersectional issue, influenced by an additional raft of factors such as age, sex, disability, and socioeconomic status. One key challenge in the healthcare sector is that ethnic minorities in the UK are underrepresented in health and genetics research, meaning less information is available to help researchers and clinicians develop the most appropriate and effective treatments for each different ethnicity.

"Put simply, our research is not serving communities equally, leading to further inequalities and health disparities," says Kaustubh Adhikari, a biostatistician at The Open University. "So despite massive investments from the UK government into genetics and health research, the lack of equality in representation results in a lack of fairness and impoverishes our research and its applications."

It's this issue in particular which Adhikari, supported by the Open University's Open Societal Challenges programme, wants to tackle. Work from the group identified that minority communities are often less informed about the importance and availability of genetic testing, so raising awareness of opportunities will be a big part of the team's initial focus. "Our aim is to build relationships with local minority ethnic and disadvantaged communities, raising awareness of the opportunities to participate in genetics research, and discussing the benefits and risks for them and their wider community. It’s important that we solicit their thoughts and address their questions and ethical concerns, with sensitivity to their cultural background," says Adhikari. "By understanding their interests, needs, and current level of awareness, we can help genomics researchers and organisations engage with these communities appropriately and respectfully to facilitate their better representation in research."

This multidisciplinary team have named their initiative GRACE: Genetics Research Awareness via Community Engagement and are currently producing a selection of outreach materials including brochures, articles, and social media videos to raise awareness and understanding of health and genetics research. These resources will hopefully begin a conversation around getting involved, answering common questions, and enabling individuals to make informed decisions about their future participation in research studies. The team will work closely with these local groups, using community spaces for broader engagement events and continuing to act as a point of information for health research discussions going forward.

"We aim to build long-term sustainable relationships with these communities, to return to them periodically, informing them about our findings and assessing whether their engagement with genetics and health research has increased," says Adhikari. "We need to tackle this social inequality and facilitate not just greater representation, but better representation in research."