The cases I have covered within this blog post are just a tiny handful of hundreds upon thousands which have led to iatrophobia within Black, Indigenous, Brown, Asian and other people of colour communities. The purpose of this blog is to highlight why people of the mentioned groups above are nervous, anxious and scared of going to the hospital and placing their trust within healthcare services.

In 2020, during the outbreak of the COVID-19 pandemic, users on social media flooded the timeline with tweets and hashtags, exclaiming ‘Africans are not lab rats.’ Discussions and debates were cultivated that it was faster and cheaper to do vaccine trials on countries within Africa due to larger populations and reduced research costs. However, the ethicality of these trials were questioned for an array of reasons, including the fact that the whole continent had a miniscule amount of cases compared to other continents and regions such as North and South America, Brazil, Russia, India and Europe. Despite America taking the lead with the most cases, Africa was seen as the first choice to test out the vaccines. This rhetoric not only raised concerns of ethics, but it echoed years and years of colonial exploitation and intervention into Africa and her people.  

In 1996 in Kano state, northern Nigeria during the meningitis outbreak, 11 children died and dozens were left disabled after receiving an anti-meningitis drug called Trovan from Pfizer.[1] Parents had not been fully informed of the process.[2] They did not know that their children, 200 to be precise were part of a drug experiment. Children who did not die suffered brain damage, meningitis related symptoms such as deafness, lameness, blindness, seizures, disorientation, and in one case an inability to walk or talk. The drug had not been approved in the United States where parents were not willing to put their children up as ‘Guinea pigs’. Thereby, the company was desperate for data. A process that should have taken at least a whole year was concluded in six weeks. Trovan was later approved in the US market for adults. Not children. Two years later however, the US Food and Drug administration (FDA) warned that the drug could cause liver damage and death. Since then, it has been discontinued. This experiment alongside the discussions of 2020 highlight this need and want to test out vaccines and drugs on African bodies first and foremost before any other racial groups or demographics highlights how African bodies are seen as commodities – useful and valuable for profit, and equally as disposable. The fact that Pfizer could not find willing test subjects in America and then turned to Nigeria highlights this colonial complex of seeing Black bodies as acceptable to be used, manipulated and utilised.

Historically, Black, Brown and other people of colour’s bodies have been used and utilised unethically for research purposes. One of the most well-known cases in the contemporary of unethical experimentation on Black bodies which has led to significant iatrophobia occurred between 1932 and 1972, when Tuskegee university, Alabama, conducted a study to look at the development of untreated syphilis and how it affects the body. Scientists had claimed that syphilis manifested differently in black people than white people: damaging the neurological systems and brains of white people whereas damaging the cardiovascular systems of black people. PHS scientists decided to document this by finding a pool of infected black men from Macon Country, Alabama, withholding treatment from them, and then monitoring how the symptoms progress. Through offering medicinal care and hot meals on days of examinations, the PHS lied to the subjects, convincing them that they were being treated, not studied. The men did not know that they were in an experiment at all. The study was meant to last 6 months but lasted 40 years when physician researchers determined that autopsies would allow them to precisely trace the depredations of the disease. The study only come to an end when the media found out.

Half of the 82% of black residents who lived in Macon County at the time lived far below the poverty line. Their median income was a dollar a day. Most of these people were sharecroppers who farmed cotton. Medical care did not exist for most of them. Thereby, the study was highly enticing. 600 impoverished African-American men were chosen to participate under the pretence that those who had syphilis, 399 to be precise, would be cured. Despite the discovery of penicillin in 1947, and it being widely used to cure syphilis, these men were not given access to the drug – for the purpose of monitoring the progress of the disease. Resultingly of malpractice, 128 men died. In addition to being told that they were going to receive treatment and tended to, they were also offered ‘free burials’. This would enable PHS doctors to autopsy them – control their bodies both within life and in death as cadavers. When the United states entered World War Two, Tuskegee syphilis study subjects were exempted from the draft because the PHS feared that they would be treated for syphilis in the military. This study was the mental, emotional, physical abuse and manipulation of the most socio-economically deprived members in the American South during the Jim Crow era and the Great Depression.

The study finally, and only came to a halt when Peter Buxtun, a recently employed Public Health Service official learnt about the experiment in 1966. He filed official grievances many times to the Centers for Disease Control and Prevention but was rejected on the basis that the study had still not finished. He filed another grievance after the assassination of Martin Luther King Jr, hoping he would be heard in light of the racial and political upheaval during the height of the civils rights movement. He was rejected again. He then leaked information about the experiment to Jean Heller, a writer and journalist of The Associated Press, New York City. The article was published in The Washington Star and The New York Times in July 1972. Once the study became public knowledge, it immediately ended. By then, 7 of the men had died from syphilis, 150 from heart failure due to syphilis, 40 spouses had contracted syphilis and 19 children were born with it.  

Several major ethical issues were violated in the Tuskegee study, including:

• Lack of informed consent; participants were not told about all aspects of the research
• The PHS took advantage of a deprived socio economic group and situation
• Patient welfare was continuously overlooked through penicillin treatment being withheld
• All test subjects were black. Had they actually cared about finding out the different ways in which syphilis affects black bodies compared to white bodies, they would have conducted this exact experiment with the exact variables and time length on white bodies as well.

Societally, these ethical issues have yet to be resolved. Within present medical care, BIPOC patients receive less information, empathy, and attention from their physicians regarding their medical care than their white counterparts.⁴⁶ A lack of information results in limited awareness, knowledge or understanding of the availability or value of medical research.[3] Patients have been misdiagnosed because clinicians could not recognize their rashes. Immunologic diseases such as lupus, life-threatening drug reactions, and other conditions that manifest themselves on the skin get missed for the same reasons.[4] This comes down to the lack of inclusiveness and representation of BIPOC people within teaching methods and resources. For example, the human anatomy and physical responses to illnesses or medication being studied continuously on lighter skin tones within text books. These are factors which contribute to unconscious biases. Studies have also revealed denial of a patient of colour’s pain occurs widely when treating stomach pain, appendicitis, labor pain, knee pain, migraines, and many others.[5] One of the most common examples of implicit bias in medicine is the denial or limitation of pain medications to black patients for situations where white patients routinely get them. Racism within the medical field takes different forms and shapes from unethical experimentations to racial biases when diagnosing and treating patients.

Another form of medical racism tied in with sexism is the control of BIPOC women’s sexual reproductive organs. After being tested on animals, The Pill, Norplant, and the Depo-Provera shot were first tested on women in Mexico, Africa, Brazil, Puerto Rico, and India, prior to being approved by the FDA. They were then administered to large numbers of girls and women in US venues that were disproportionately and usually overwhelmingly African American and Hispanic.[6] In Puerto Rico, in addition to the testing out of drugs and contraceptives, between the 1930’s to 1970’s, the American federal government and eugenicists conducted the forced sterilisation of one third of the population. This was conducted as a means of modernising Puerto Rico and making it more economically developed. The country was said to be overpopulated. During this period, Puerto Rican women were being encouraged to join the work force. Sterilisation clinics were placed in factories where women worked, thus integrating sterilisation into women’s work life. These women were not told that these sterilisations were not irreversible. Within later legal procedures, these women were blamed for their ‘lack of communication’ and ‘misunderstanding’ due to them speaking Spanish and not English, thereby it was their fault that they did not understand the procedures taking place at hand. Notably, informed consent only became a legal requirement in the 1970’s.

There is an undeniable history of selecting BIPOC bodies for the riskiest studies. With the Trovan experiment, we saw the unethical utilisation and consequential murder of Nigerian children through being used as guinea pigs. With the Tuskegee syphilis study, we saw this again tied in with the myth of medical distinctiveness, that syphilis manifested differently in black people compared to white people. Through gendered racism, women of colour within globally deprived areas have been used as guinea pigs as well to ensure that women of the Global North have access to birth control and will be able to use it safely and effectively. Time and time again, we see the mistreatment and mass exploitation of distinct racial groups and deprived socio economic groups. It’s not us that needs to change. It’s the system around us.

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[1] BBC (2011), ‘Pfizer: Nigeria drug trial victims get compensation’ BBC, 11/08/2011 Pfizer: Nigeria drug trial victims get compensation – BBC News [26/03/21]

[2] David Smith (2011), ‘Pfizer pays out to Nigerian families of meningitis drug trial victims’ The Guardian, 12/08/2011 Pfizer pays out to Nigerian families of meningitis drug trial victims | Nigeria | The Guardian [26/03/2021]

[3] Scharff, Darcell P et al. “More than Tuskegee: understanding mistrust about research participation.” Journal of health care for the poor and underserved vol. 21,3 (2010): 879-97. doi:10.1353/hpu.0.0323

[4] Papier, Art (2020), ‘To begin addressing racial bias in medicine, start with the skin’, statsnews.com (20/07/2020)   To begin addressing racial bias in medicine, start with the skin – STAT (statnews.com) [26/03/2021]

[5] Epstein, Helene M. (2020) ‘Why the Color of Your Skin Can Affect the Quality of Your Diagnosis’, improveddiagnosis.org (01/05/2020) Why the Color of Your Skin Can Affect the Quality of Your Diagnosis (improvediagnosis.org) [26/03/2021]

[6]  Washington, Harriet A. Medical Apartheid: The Dark History of Medical Experimentation On Black Americans From Colonial Times to the Present. New York: Doubleday, 2006. P.202.