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Friend of Tortoise Exclusive

How do we make sure medical research benefits every community?

How do we make sure medical research benefits every community?

This event is exclusive to Friends of Tortoise

In partnership with Genomics england

Cutting edge research is exciting and important – but who decides what gets researched first? How do we choose where we are focussing for the latest scientific breakthroughs? Is the data available to genomics researchers representative of everybody’s healthcare needs, or not?

This is the first of a two part ThinkIn series with Genomics England that looks at the role genomics plays in healthcare within the UK and globally. The next ThinkIn takes place on July 5, with The Rt Hon Matt Hancock MP, Secretary of State for Health and Social Care and Chris Wigley, CEO, Genomics England. Click here for more information. 



The discussion focussed on how research decisions are made, the lack of diverse representation in genomics datasets, and how everybody’s healthcare can only be treated if all communities are included in research processes. 

Minimising Inequality in what we research

Recognising the interaction factors, such as race, have in determining the topic of research. For example, research into sickle cell disease, a condition typically associated with people with an African or Caribbean family background, is massively underfunded in comparison to cystic fibrosis, which is common among white ethnic groups. Richard Scott, Clinical Director of Genomics England, outlined two areas where the company is prioritising “diversity in its broadest sense”. First, in how genetic factors influence somebody’s risk of getting critically ill from COVID-19; second, in addressing the diagnostic gap between children with European and non-European ancestry suspected of having a rare genetic disease. 

Minimising inequality of how research is conducted

White people are 87 per cent more likely to take part in clinical trials than people from BAME communities. Widening participation should be an urgent priority to avoid creating further bias in diagnosis and treatment. This will help to personalise and target practice, while listening to personal stories in new and creative ways will improve the robustness of data. Datasets, meanwhile, should expand to include experiences from everyday life. If we miss the context and the history of data collection, we risk bias. Finally, it is important to distinguish between issues of common practice (the context in which people are recruited to research studies and data is collected) with the outcomes we want and equality of benefit to patients in healthcare. 

Recognising these questions are all political

It is extremely difficult to choose how to identify research priorities. Do we “pick low-hanging fruit” and focus on an area close to a breakthrough, or spread ourselves more widely in a more equitable settlement? Ultimately, elected representatives, accountable to the public, must be publicly accountable for these decisions. 

Protecting the use of crucial GP data

GP data is crucial for early stage insights. It also helps identify clinical trial participants. Caroline Cake, CEO of Health Data Research UK, raised concerns that the recent NHS data controversy could damage public trust and leave them less likely to share their own. We must work harder to ensure all communities are represented in GP data (reporting family genetic history should your family live or have lived outside the UK should be carefully taken into account by GPs, for example). 

We should consider expanding public access to genetic screening

Certain communities are likely to pay disproportionately high bills for crucial tests. The only mutations covered by the NHS are BRCA1 and BRCA2 – essential to cancer risk assessments. You are likely to have to pay to test for the full suite of mutations, and we should consider the disproportionate burden placed on certain communities as a result.

Book your place at our next ThinkIn in partnership with Genomics England

editor and invited experts

Chris Cook
Contributing Editor

Richard Scott
Clinical Director, Genomics England

Dr. Latha Chandramouli
Consultant Community Paediatrician, Sirona care & health

Mavis Machirori
Senior Researcher at the Ada Lovelace Institute