“We must not see any person as an abstraction.
Instead, we must see in every person a universe with its own secrets,
with its own treasures, with its own sources of anguish,
and with some measure of triumph.
—ELIE WIESEL
from The Nazi Doctors and the Nuremberg Code”
Studies of genetic diseases are generally largely based on European ancestry, with ethnically diverse people being massively underrepresented. This has huge implications for the development of science – it means the application of these findings to ethnically diverse populations could be dangerous if it leads to an underassessment of the risks involved. However, previous mistreatment and manipulation of minorities has led to a distrust in healthcare, which might partly explain the lack of minority participation in medical research.
The history of discrimination of ethnic minorities in healthcare can be characterised by racial injustice, unequal access to healthcare and segregation of medical facilities. In the US in particular, in the 1950s black people faced substantial discrimination in hospitals meaning they are now less willing to participate in medical research. The Tuskegee Syphilis study, conducted between the 1930s and 1970s, furthered this lack of trust in healthcare. Researchers withheld treatment of black men with syphilis, to study the natural progression of the disease without the informed consent of the patients. When this study came to light in the 1970s, it directly resulted in changes to medical ethic regulations but the effects on the community’s perception of healthcare remain.
Today, racial biases in health research and healthcare continue to affect the lives of ethnic minorities. A report led by the University of Manchester found that inequalities in access to and the experience of healthcare “are rooted in experiences of structural, institutional and interpersonal racism.” The report contained many shocking examples of discrimination of ethnic minorities in the healthcare system. For instance, Asian babies are over-represented in admissions to neonatal units from home for jaundice, potentially because visual estimation of jaundice in babies might be “particularly unreliable” for babies with darker skin tones meaning Asian babies are more likely to be discharged from postnatal care and re-admitted, delaying access to care.
This systematic racism has led to significant health inequalities between ethnic minority and White British groups, which the COVID-19 pandemic further exposed. Public Health England found that ethnic minorities had between 10% and 50% higher risk of death than White British groups. Similarly those born outside of the UK and ethnic minority communities had a higher infection and mortality rate than the White British population in the UK and elsewhere.
Of course, multiple factors are likely to play a role in ethnic health inequalities such as socio-economic deprivation, physiology, overcrowded housing and demographics. Regarding COVID-19, ethnic minorities were disproportionately exposed to the virus as they were more likely to be in occupations which meant they could not work from home.
It’s therefore even more important that healthcare and medical research effectively serves ethnic minorities.
The absence of minority communities in medical research might stem from the history of mistreatment and manipulation of minorities, as well the current discrimination in healthcare, therefore leading to a distrust in medical research.