How Racial Inequality Led To A Mistrust of The Healthcare System

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“Medical mistrust is significantly contributing to delays in African American men utilising the health care system,” but who is to blame for their mistrust? One cause of this can be traced back to the discriminatory behaviour in the Tuskegee syphilis experiment conducted from 1932-1972 in Alabama on 600 black men; 399 of which had syphilis, and the control group of 201 who did not. [1]

The men involved in the experiment were predominantly working-class sharecroppers who were not able to afford sufficient healthcare or treatment for their disease, and this economic factor was taken advantage of. Fliers were posted around the town promising free blood tests and treatment for ‘coloured people’ with ‘bad blood’, with no mention of any experiments taking place. The victims were not informed of syphilis and were only told that they had bad blood i.e. there was no informed consent for this experiment to occur. [1]

None of these men received any treatment – they were treated as experimental guinea pigs.

Their suffering from side effects of the disease was simply observed until they died before being examined post mortem, proving the black men to be seen as disposable beings by the American government. This behaviour caused further illness in the relatives of the untreated men, and this disgusting treatment was extended from its intended period of six months to 40 years; an 8,000% increase. [1][2]

‘The Study of Untreated Syphilis in the Negro Male’ started in 1932 and ended in 1972, whilst penicillin was found to be a highly effective treatment for syphilis in 1945. This means that the free ‘medical checks’ that the black males were receiving were simply role plays to encourage prolonged participation in the experiment. Organisers of the experiment liaised with physicians in the area to prevent the participants from accessing penicillin, meaning they were only given placebos and were followed to private health appointments to further implement this. [2]

This maleficent behaviour led to the ‘Tuskegee effect’; a name for the medical mistrust by black people in fear of discrimination during treatment. The syphilis experiment is enough evidence to prove that, whilst illnesses do not discriminate, people do, which can cause variation in treatment received and lead to life-threatening outcomes.

The Tuskegee effect is still present in today’s population with many black people being reluctant to receive vaccinations or flu shots, due to suspicion surrounding their efficacy and validity. With talks of various COVID-19 vaccines being trialled, it is more important now than ever to address this issue as there have been reports stating that there is a higher rate of death in BAME people; 95% of doctor deaths in the UK are BAME whilst only 44% of medical staff are BAME, meaning they are at an increased risk of severe effects from the virus. [6][5]

Another reason for this mistrust can be linked to the HeLa cells of Henrietta Lacks; an African American woman who suffered from cervical cancer and syphilis. Whilst Lacks was receiving radiation treatment for her cervical tumour a sample of her cells were unknowingly sent to a biopsy lab for experimentation by Dr. Gey. Her cells were the only sample out of multiple patients which did not die, thus they were the first immortal human cells to be discovered. This was a turning point in medicine, as they are currently used to test the effects of substances and processes (e.g. radiation, cosmetics, toxins) on human cells. [3]

After Lacks’s death in 1951 (at a young age of 31), scientists still continued to use her cells for research 20 years later. They turned to her children and widowed husband for blood samples but, due to the Tuskegee syphilis experiment occurring at the time, he was understandably distrustful of white doctors, but allowed them to draw blood. Similarly, the doctors failed to communicate that their samples were being used for research leading to the Lacks family awaiting blood test results that were never coming. [4]

Although many look down on anti-vaxxers, it is important to recognise that some have valid reasoning to their beliefs which others may have the privilege not to resonate with or understand.

A comparison by Malone Mukwende of Kawasaki disease on two different skin tones

There have also been various discussions surrounding the lack of representation in medical textbooks, leading to a higher risk of misdiagnosis in people of colour, or later late diagnosis. This may not be a major issue in some cases, but there is a higher chance of death in others and a definite increase in discomfort in all.

A medical student, Malone Mukwende from St George’s University in London, has created a handbook for medical students to be more aware of symptoms on various skin shades. If implemented into the UK medical education system this can be a turning point for patients who suffer from dermatological symptoms, such as eczema, which may appear pinkish on lighter tones but brown or purple on darker tones. People need to be able to recognise symptoms in themselves to get the medical help they require and to prevent anyone from suffering in silence. [7]

These are only the most famous cases, and there will be many which have occurred unreported or are not as well known (eg. the racial empathy gap or gynaecology experiments on slaves) which also contribute to the history behind medical mistrust.

It is important to address these issues and educate oneself to increase awareness of historical factors or beliefs that one may have the privilege to ignore, in order to decrease the gap in treatment between different races and increase the quality of life of black patients.

References

  1. Elizabeth Nix, ‘Tuskegee Experiment: The Infamous Syphilis Study’, History, May 16, 2017
  2. DeNeen L. Brown, ‘‘You’ve got bad blood’: The horror of the Tuskegee syphilis experiment’, May 16, 2017
  3. Kira Dineen, ‘Women In Science: Remembering Henrietta Lacks’, The Jackson Laboratory, August 01 2016
  4. Joanna Moorhead, ‘Henrietta Lacks: the mother of modern medicine’, The Guardian, 23 Jun 2010
  5. ‘COVID-19: the risk to BAME doctors’, BMA, June 18 2020
  6. Haroon Siddique and Jamie Grierson, ‘Historical racism may be behind England’s higher BAME Covid-19 rate’, 16 Jun 2020
  7. ‘Medical student creates handbook of clinical signs on black and brown skin’, ITV, July 01 2020

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