By Curtis Asante, Associate Director of Members' Programmes at Microbiology Society

Published: 16 March 2021 (original blog published on LinkedIn 25 February 2021)

All views are Curtis’ own.

The middle part of 2020 was a turning point in world history. The Black Lives Matter protests erupted during the summer of 2020 - and then, buoyed by the COVID-19 pandemic, both historical events forced many organisations to begin unpicking decades of unconscious bias and institutional racism.

UK Research and Innovation (UKRI) have started work to better understand how it may be part of the problem. Wellcome admitted to perpetuating racism, and is looking to address this. Most recently, Cancer Research UK released its Equality, Diversity and Inclusion strategy, which includes targets for increasing ethnic minority staff, commitments towards making the funding ecosystem more inclusive for Black researchers as well as ensuring that the research it funds gives appropriate consideration to increasing diversity.

Let’s take a step back and look at how research funding works - and where these issues arise.

At any one time, an individual researcher may be eligible for multiple grant awards, and while the odds are stacked against all applicants, these odds vary depending on an individual’s level of seniority, area of research and their standing in their field. As well as this, the chances of receiving funding are always lower if the applicant is Black.

This point was highlighted in August 2020, when a group of ten Black women - professionals, academics, researchers and community representatives involved in research - wrote an open letter to UKRI, asking it to review how it allocated funding. This was because when it awarded £4.3 million across six projects to research links between COVID-19 and ethnicity, not one of the leading academics was Black.

There are also clear disparities in what gets funded. This was demonstrated by a study led by Dr John Strouse from Duke University in the US, which showed that despite both diseases reducing life expectancy, cystic fibrosis was better funded than sickle cell disease.

The overwhelming majority of people with sickle cell disease are Black and those with cystic fibrosis are predominantly white. The data is patchy but in the US, the birth rate of sickle cell trait, which causes a far less severe form of the disease is about 1 in 14 Black individuals compared to about 1 in 333 white individuals. Conversely, the birth rate for cystic fibrosis is 1 in 3,000 white individuals compared to 1 in 17,000 Black individuals.

The authors of the study found that even though National Institutes of Health (NIH) funding for the two diseases was similar, when this was measured against the number of people with each condition, the amount of NIH investment per person with cystic fibrosis was about 3.5 times greater than that for sickle cell disease.

The most shocking revelation was that philanthropic funding was about 75 times greater for cystic fibrosis. An equivalent study hasn’t been published for the UK, but this is not just an American issue. In England, it has been reported that cystic fibrosis affects around 10,000 people compared with 15,000 with sickle cell disease yet it attracts more than 30 times more financial support for clinical care and services.

The lack of equity in research funding for Black people could not be clearer but what might explain this?

Part of it can be traced back to the makeup of academia and research institutions. If you are white and have only ever interacted with white people, you would not be expected to have interacted with anybody who has suffered from sickle cell disease and so this may not be an attractive research career.

If you do happen to be one of the relatively few researchers studying sickle cell disease - Black or white - you are then likely to be squeezed out of the system through lack of opportunity and funding. The resulting decrease in research productivity and novel drug development for sickle cell disease only exacerbates the funding disparities.

So what needs to happen?

At the Campaign for Science and Engineering annual lecture in November 2020, Professor Dame Ottoline Leyser spoke in depth about how science and engineering are integrated in the world around us and yet people often see these topics as being part of a world to which they do not belong.

A starting point for change would require an increase in access to the opportunities that these fields offer, which would ultimately diversify research institutions and companies. It would also be important to prioritise areas of research that reflect more diverse populations within society.

The next step would require driving change in government decision making and the way that funding institutions give out their awards. The COVID-19 pandemic has shown us just what happens when this works well.

A concentrated research effort shifted the scientific research landscape, at least in the short term, which was aided by injections of funding and collaborative efforts from and between government and industry. The Pfizer COVID-19 vaccine, first rolled out in the UK in December 2020 and closely followed by AstraZeneca, are direct outputs of this. Imagine if similar interventions were implemented for sickle cell disease and other diseases which disproportionately affect Black people around the world.

This collective response captured the challenge but ultimately, actions speak louder than words.

It’s one thing to make the right noises about diversity and inclusion at a time when the topic has become very mainstream. But the main decision makers in government, industry and academia need to be both ethnically diverse and have diversity of thought to drive real change. Big, bold decisions need to replace well-meaning gestures and incremental progress. In the meantime, the lives of Black and other marginalised people will continue to hang in the balance.