Many European countries avoid breaking down data along racial or ethnic lines out of concern over privacy or discrimination, but COVID-19ʼs outsized impact on Black and Asian people has exposed flaws in the approach, some scientists and activists said, writes Victoria Waldersee for Reuters.
They want more comprehensive data collection across the continent to improve understanding about how and why COVID-19 affects different communities, and thereby help countries to tailor testing and care to better protect them.
There is no easy fix. Even in Britain, where more detailed data on race and ethnicity is available, there is debate over the root causes of higher infections among certain groups.
The conditions people live and work in explain most of the disproportionate impact, studies show. Whether minority communities trust hospital staff to treat them fairly, or have equal access to healthcare, could also play a role, Waldersee reports for Reuters.
A recent survey by ClearView in the United Kingdom, for example, showed that 60% of Black people did not feel that the National Health Service protected their and White peopleʼs health equally.
The United Nations High Commissioner for Human Rights, Michelle Bachelet, said earlier this year that fuller data in countries including Brazil, Britain and the United States served an important purpose.
“The data tells us of a devastating impact from COVID-19 on people of African descent, as well as ethnic minorities in some countries,” she said, Reuters reports. “In many other places, we expect similar patterns are occurring, but we are unable to say for sure, given that data by race and ethnicity is simply not being collected or reported.”
Spurred by both the pandemic and Black Lives Matter protests, the European Union vowed in September to look into the obstacles to harmonising data collection across Europe. It said it wanted to understand “structural aspects of racism and discrimination”, and a roundtable on the issue is planned for the end of 2021, the European Commission told Reuters.
Data as policy tool
Disaggregating data to reveal patterns among subgroups of the population can be used to address inequality.
This April, the US Centers for Disease Control and Prevention began collating data from states for a weekly tracker on COVID-19 infections and deaths by race.
But most countries in Europe have been less willing to record the racial makeup of their societies, sticking to a “colour-blind” model of assimilation of immigrants.
In the absence of comprehensive data, agencies like the European Union Agency for Fundamental Rights (FRA) and research institutes like INED in France have conducted smaller studies to outline racial inequalities before and during the pandemic.
FRA conducted a survey of 6,000 Black people in 12 member states in 2019 showing that Black people in the European Union are three times as likely as their white counterparts to live in overcrowded housing, with 55% at or below the poverty threshold.
In July, France’s National Institute of Statistics and Economic Studies (INSEE) published the country of birth of coronavirus victims in March and April. Mortality for those born in Sub-Saharan Africa increased 114% in 2020 compared with 22% for French-born residents.
In Britain, where ethnicity data collection has been in place for several decades, there is debate over how to respond to studies showing that poverty or overcrowded housing among ethnic minorities is largely to blame for higher coronavirus infection rates, Reuters continues.
Equality think-tank the Runnymede Trust and research institute IPPR reported in October that 58,000 more people would have died in the first wave of the coronavirus in Britain if the white population had faced the same risk as Black communities.
The link to the full report is below.
Recent research has highlighted the importance of genetic variance to the understanding and treatment of disease. It argues that racial deficits and biases in data for research are obstructing the study of African health problems and solutions, as reported in MedicalBrief this month.
Landmark study of African genomes details human migration and health
A landmark study by University of Witwatersrand geneticists and partners that provides insights into ancient migrations of Bantu language-speaking populations, as well as environmental adaptation and susceptibility to disease, features on the cover of a recent edition of Nature.
The study uncovered more than three million new genetic variants in one of the most extensive studies of high-depth-sequenced African genomes reported to date. Analyses of the whole genomes of 426 individuals from 13 African countries, whose ancestries represent 50 ethnolinguistic groups from across the continent, inform these findings.
The study shows that these newly discovered variants were found mostly among newly sampled ethnolinguistic groups. Researchers identified new evidence for natural selection in and around 62 previously unreported genes associated with viral immunity, DNA repair and metabolism.
These findings improve the current understanding of migration across the continent, and identify responses to human disease and gene flow as strong determinants of population variation.
The study contributes a new major source of African genomic data, which showcases the complex and vast diversity of African genetic variation and which will support research for decades to come.
“Africa is the continent with greatest genetic diversity and this study shows the importance of African genomic data for taking science and health research forward,” says Zané Lombard, a senior author of the study and an associate professor in the division of human genetics in the Faculty of Health Sciences at Wits and at the National Health Laboratory Service.
“It is an important step in redressing existing biases in available data for research, which hamper the study of African health problems and narrows global research.”
The link to the full report is below.
Ethnic inequalities in COVID-19 are playing out again – how can we stop them?
IPPR and Runnymede Trust in the UK reported the following on 19 October 2020:
Once again COVID-19 is running along racial lines. Despite inequalities exposed earlier this year, there has been little effort to stop COVID-19 hitting minority ethnic communities hardest as we enter the second wave.
Without urgent action, the effects of pandemic are set to be felt unequally again. Already the latest national infection rates are over four times higher in Pakistani communities than white communities.
Addressing these inequalities – and reducing the impact of COVID-19 on black and minority ethnic communities – is an issue of racial justice. Our goal must be a fairer and more racially just society. But it is also a vital part of our efforts to control COVID-19. Structural inequalities fuel pandemics: addressing them is crucial to avoid more severe lockdowns.
The extra risk of death in minority ethnic groups is one of the starkest health inequalities in recent times. Between March and May 2020, men and women from all ethnic minority groups (except females of Chinese ethnic background) had a greater risk of death from COVID-19 compared to those of white ethnic background.
The death rate was 3.3 times higher for black males and 2.4 times higher for black females compared to white males and females. To put this disparity into context, our analysis with CF healthcare consultancy estimates that over 2,500 deaths could have been avoided during the first wave in England and Wales if the black and south Asian populations did not experience an extra risk of death from COVID-19 compared to the white population (after adjusting for differences in age and sex).
Put differently, we estimate over 58,000 and 35,000 additional deaths from COVID-19 would have occurred if the white population had experienced the same risk of death from COVID-19 as the black and south Asian populations respectively.
The link to the full report is below.
Majority of black people in UK believe they are not treated equally by NHS, poll shows
Most black people in the UK do not believe they are treated the same as white people by the National Health Service, research shows, writes Lizzie Dearden for The Independent in a 7 September 2020 article.
Polling carried out during the coronavirus pandemic, which is disproportionately affecting ethnic minority communities, also found that the majority of black people in the UK do not believe they are treated equally by police or that their human rights are properly protected.
It suggested that older black people, particularly over-70s, and men have greater trust in authorities than younger people and women.
The report was by ClearView Research, which said that its polling and interviews, carried out in July and August, was the “first research of its kind in the UK”. It found that 60% of black people in the UK do not believe their health is as equally protected by the NHS compared to white people.
The link to the full report is below.
Johns Hopkins – Coronavirus Resource Centre
Racial data transparency
Access to racial breakdowns of COVID-19 data is key to understanding how racial disparities affect the spread of the virus throughout the US. Johns Hopkins has, among other things, been monitoring which states have released breakdowns of COVID-19 data by race?
Dr Lisa A Cooper is Bloomberg Distinguished Professor at the Johns Hopkins Bloomberg School of Public Health and the Johns Hopkins School of Medicine, and is Director of the Johns Hopkins Center for Health Equity.
In a Q&A she was asked, among other things, whether there was – for most public health challenges – data with key demographic characteristics like age, sex and race?
We have data that documents how most public health challenges affect different groups in our society. For example, we know that rates of conditions such as high blood pressure, heart disease, diabetes and cancer increase with age. We know that conditions such as depression and obesity are more common among women than among men.
An extensive amount of data shows disparities in health by race, ethnicity and social class, across the lifespan. Every year, thousands of African American, American Indian and Latino babies are born into poverty and other adverse circumstances, putting them at risk for obesity, heart disease, diabetes and asthma.
Adolescents and young adults from disadvantaged backgrounds, compared to more affluent and educated peers, struggle much more with health problems including obesity, asthma, neurocognitive disorders and mental health diagnoses.
Across adulthood, African Americans are more likely to die from all causes than their white counterparts. They suffer from higher rates, at younger ages, of high blood pressure, heart disease, kidney disease and colon cancer than white Americans.
Latinx communities and Native Americans suffer from higher rates of obesity and diabetes than whites. In old age, millions of older African Americans, Native Americans, and Latinx Americans suffer more than do older whites from disease and disability.
These health disparities matter, says Cooper, because they are “preventable differences in the burden of disease, injury, violence or in opportunities to achieve optimal health”.
The link to the Johns Hopkins website resource is below.
[link url="https://www.reuters.com/article/health-coronavirus-europe-data-insight-idUSKBN27Z0M3?"]Reuters story – COVID toll turns spotlight on Europe's taboo of data by race[/link]
[link url="https://www.medicalbrief.co.za/archives/landmark-study-of-african-genomes-details-human-migration-and-health/"]Article in MedicalBrief – Landmark study of African genomes details human migration and health[/link]
[link url="https://www.ippr.org/blog/ethnic-inequalities-in-COVID-19-are-playing-out-again-how-can-we-stop-them"]IPPR article – Ethnic inequalities in COVID-19 are playing out again – how can we stop them?[/link]
[link url="https://www.independent.co.uk/news/uk/home-news/black-people-equality-nhs-coronavirus-police-human-rights-b404477.html"]The Independent story – Majority of black people in UK believe they are not treated equally by NHS, poll shows[/link]
[link url="https://coronavirus.jhu.edu/data/racial-data-transparency"]Johns Hopkins – Coronavirus Resource Centre – Racial data transparency[/link]