Barking at the wrong tree?

As an ex-nurse, lecturer in health studies with expertise in highlighting and addressing health inequalities and now a health activist, I wish to express my serious concerns about an initiative launched by the National Institute for Health Research (NIHR). I am not a geneticist, but that does not exclude me from challenging the very premise of this work from a social policy perspective. In September 2025, it urged Bangladeshi and Pakistani communities (not people) to join in the groundbreaking health study. The NIHR wants to better understand the link between a person’s gene and their health and reduce health inequalities in these communities. Drawing from historical and contemporary evidence, I argue that the stated plan will fail. The research is based on a purely medical model, relegating the impact of social determinants, structural inequalities and deep-seated direct and institutional racism in the wider society and the health care system. Reference will be made to the way patients, carers and significant others with haemoglobinopathies (more on this later) were and still are receiving substandard levels of care. The assumption made by the NIHR is that once the cause of a disease is detected (in this case, gene or genes) then social and health policies would follow and result in the delivery of appropriate and sensitive care. 

National Institute for Health Research (NIHR)

The NIHR is funded by the Department of Health and Social Care and comprises fifteen Commercial Research Delivery Centres (CRDCs) across Britain, and one is based in Birmingham. CRDCs are made up of universities, NHS trusts, voluntary sectors, GP’s and commercial sectors. Essentially, they are a direct public-private collaboration between the government and the pharmaceutical industry. It aims to expand access to innovative clinical trials and deliver life-changing treatment to some of the UK’s most deprived communities. “£7 million will be invested to establish various facilities to conduct research, make it easier for individuals across the region to participate in health care treatment in partnership with drug companies to deliver treatment trials in a safe and responsible way”.  The CRDC plans to recruit volunteers to assist in this venture. In April 2026, the Royal Wolverhampton NHS trust launched a “Study to improve communities’ health. “British Pakistani and Bangladeshi communities across Walsall and Wolverhampton are being invited to take part in a huge community-based genetics study to help drive improvements to their health.  These populations experience significantly higher rates of diabetes, cardiovascular disease and poorer health outcomes overall. No reference is made here that both these boroughs consistently rank among the most economically and socially challenged districts in England.

Genetics

Rutherford, a well-known geneticist, explains. Genes are pieces of Deoxyribonucleic acid (DNA) that code for proteins and are the “engine rooms”. All life is built of or by proteins. Genes are part of chromosomes, which are long stretches of DNA harbouring many, sometimes thousands of genes. Chromosomes are also built from lots of DNA that controls the regulation of genes, that is, switches that say when and where they need to be active. He continues, all humans share almost all of the DNA, i.e. 99.9%. The genetic differences between us, small though they are, account for much but not all of the physical variations we see or can assess. We have 20,000 genes each, billions of DNA letters and trillions of cells. Genetics and the environment form an inseparable feedback loop. They constantly influence each other. Skin colour (the most obvious difference between people) is a very bad proxy for the total amount of similarity or difference between individuals and between populations. Racial difference is skin deep. In other words, ‘race’ is a social construct. 

Haemoglobinopathies

The NIHR and the CRDC assume that identifying a gene as the cause of a disease will lead to policies that address it. The following case examples challenge this premise by examining the extent to which the NHS has responded to the diagnosis, treatment and care of people who have been diagnosed with haemoglobinopathies. They are both genetic blood disorders and range in severity from not having symptoms to life-threatening disorders. They are sickle cell and thalassaemia. These are prevalent in particularly African, African-Caribbean, South Asian, Middle Eastern and Mediterranean people. These have been known by the NHS since the early 1970’s. Despite robust and recurring evidence that many sufferers, carers and significant others were receiving substandard care, little changed. Most of the initiatives came from the under-resourced and underfunded voluntary sector, with assistance from some professionals. In 2021 an All-Party Parliamentary Group on Sickle Cell and Thalassemia expressed that patients received sub-standard care, a lack of belief regarding their pain especially in Emergency Departments. The aptly named report “No one is Listening” related how those in excruciating pain were frequently not believed. Hospital staff often lacked sufficient training, leaving patients to educate medical professionals about their own conditions. Some parents were suspected of causing bruising on their children’s bodies (a common manifestation of sickle cell disease), and black men were suspected of being drug addicts. Deep-rooted racial inequalities, with overt racism, led to avoidable deaths. A case in point was a twenty-one-year-old black man who was experiencing a sickle cell crisis in North Middlesex Hospital in 2019, who rang 999 from his hospital bed to request oxygen. The nursing staff had refused his requests. He died soon after. The coroner ruled that he “would not have died if hospital workers had recognised sickle cell disease” and treated him sooner.

NHS screening for thalassaemia started in 2001 and was universally implemented in England in 2006. Three decades later. Lack of educational exposure to hospital nurses, doctors and other care workers contributed to these clinical shortcomings. As a lecturer in health studies, I noticed a distinct lack of time made available in the curriculum for nurses. Shortage of time was often cited as a reason. The response for the screening for haemoglobinopathies needs to be contrasted to the management of Phenylketonuria (PKU) a genetic disease that is experienced by mainly by white people. National screening for PKU started in 1969.  

Wider health inequalities

Concerns about racial inequality in health have been identified since 1979, 1987, 1995, 2000, 2010 and 2020. A few examples are cited here. These are in mental health, where most black and Asian people are overrepresented in detention under the Mental Health Act and receive more psychotropic medication than their white counterparts. In maternity care, Black women are four times and Asian women twice as likely to die during childbirth. Black women are seen as aggressive, and Asian women as “princesses”. The most recent illustration was the impact COVID-19 in 2021/2 had on Black, Asian and other ethnic minority (BAME) patients and staff. This group was significantly represented in both morbidity and mortality. All the evidence indicated that these were not due to genetic differences but to social determinants of health and inadequate care provision. These are living in poverty, the quality of housing and neighbourhoods, the amount of pollution in the environment, the type and quality of both the place and quality of employment, pay and conditions attached to it, built environments, access to transport, leisure, availability and affordability of healthy food. These are all caused by institutional racism. The other factor that has been gaining traction for a few decades is that racism itself is a significant determinant of health. Racism increases stress levels. Continuous stress ages us all and is a slow killer. It creates biological changes in energy levels in the form of glucose in our bloodstream. These in the long-term lead to obesity, diabetes, and chronic constriction of blood vessels, which can lead to hypertension and heart disease. Racism kills and has been killing BAME people for centuries. This is likely to continue for some time. All or most of these are preventable by addressing the social determinants of health. 

The NIHR and CRDC research aims will fail. Research is and has always been a political activity. It is an illustration of power. Those with power determine what needs to be researched by whom, when, how and for what purpose. Furthermore, many research findings to address racial inequalities have been discussed for decades. These have hardly been implemented. The main beneficiaries of this research would be universities, NHS trusts, other partners and the pharmaceutical industry. Many would benefit professionally and financially. In the final analysis, the social determinants remain unchanged. Health issues will be blamed on BAME people’s genes. Yet another negative label is hoisted on this section of the community. They would be accused of placing additional pressure on the NHS and other public sectors. The ramifications will go far beyond health care. It may be seized by the hard right-wing populist sympathisers as it would give them added ammunition to inflame even more racism. It will give them “scientific” credibility. BAME people’s health will worsen.