Aude Calloch

Following the death of George Floyd and the global reaction to that tragedy, black people in the West have been under the microscope for over a year now. Likewise, the impact of COVID-19 on black communities and the implementation of the vaccine have resulted in an accumulation of debates around medical distrust and general wariness towards the healthcare sector. Indeed, on top of living in an ever more divided society, living in a world where black history is majorly ignored and misunderstood contributes to such phenomena being misconceived by the general public. Besides, the deluge of information we face every day via the media contributes to a lot of us getting the wrong idea about a lot of situations. We misinterpret one’s opinion, we judge our neighbor’s standpoints, we accuse the Other of hatred, forgetting that we as individuals cannot and will never be homogenous. The beauty of humanity comes from its differences, and although some of us sometimes share some pretty ugly thoughts, no one is better or above anyone else. Nevertheless, this isn’t how most of us think. In fact, we can all agree that it’s impossible to not judge the Other, to not scrutinize the neighbor, analyze and compare ourselves to them. We “can’t help it”. Well, yes and no. We’re not a lost cause (or at least, not all of us are). In today’s article, I want to turn our attention on the phenomenon of medical distrust amongst black people in Western societies: How did we get there? Why? Is there hope for a better tomorrow? Although there’s more than enough to write a whole book about this sole topic, let’s try and answer them in a few pages.

It is no scoop to say that the West is not known for having black people’s back. It is no scoop either to say that the West, still to this day, remains stained with the blood of more than ten millions Africans. And while you might think about slavery, I rather think about cases we barely hear about, such as the medical experimentation the West conducted (and still conducts to this day) on African populations as well as on Afrodescendent people in the West. One does not need to go to “the middle of Africa” (as I hear a lot of people say) to witness or learn about the horrors committed in the name of science against black individuals. Indeed, American writer Harriet A. Washington relates in her 2006 book “Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present” the innumerable cases of unethical medical experimentation of which black Americans have been the victims, often resulting in the death of a great percentage of them. One notorious example is the Tuskegee Experiment, which took place in Alabama and spanned for four decades, from 1932 to 1972, its end being only 49 years ago. The experiment, also known as the “Tuskegee Study of Untreated Syphilis in the Negro Male”, was one of the most immoral and ethically abusive study of contemporary American history. As its title indicates, its aim was to observe the evolution of untreated syphilis amongst black males.

To do so, the United States Public Health Service (PHS) and the Centers for Disease Control and Prevention (CDC) enrolled over 500 impoverished African-American sharecroppers from Macon County (Alabama), of which nearly 400 were syphilis-positive. While promising those men treatment for “bad blood” as well as providing disguised placebos, the PHS and the CDC never informed the participants of their positive syphilis diagnosis, ultimately resulting in the death of more than 100 of them. It is, in parallel, worth noting that by 1970, already six years had passed since the Civil Rights Act of 1964, supposedly granting equality between whites and blacks. Another broken promise for America.

As Harriet A. Washington brilliantly demonstrated in “Medical Apartheid”, there is enough material to make an entire book about this topic, even solely regarding the United States. This gives us a frightening idea about the totality of similar cases worldwide. In fact, at the time when the Tuskegee Experiment was reaching its end, a similar case appeared in Zimbabwe (then called Rhodesia), whereby Depo-Provera, also known as depot medroxyprogesterone acetate (a contraceptive injection), was clinically tested on black Rhodesian females. PhD in Sociology and Feminist Studies Amy Kaler in fact explains in her article “A Threat to the Nation and a Threat to the Men: The Banning of Depo-Provera in Zimbabwe, 1981” published in the Journal of Southern African Studies, Volume 24, No. 2 (June 1998), that Rhodesian women on white-run commercial farms were in fact coerced into accepting Depo-Provera.

Likewise, between 1971 and 1989, an estimated 900 sex reassignment operations were forcibly performed in South-African military hospitals, of which the majority of the victims were males. This project, led by Aubrey Levin, a white South African-born psychiatrist, had for aim to rid the military of homosexuality. A decade later, the CDC, in cahoots with the World Health Organization (WHO) and the National Institutes of Health (NIH) were funding projects to test AZT (also known as Zidovudine) treatments on HIV-positive African subjects, all without proper informed consent.

So what are the consequences of these events on the collective unconscious (the kollektives Unbewusstes as Carl Jung defines it) of black people? In order to understand the implications of such events on black western communities, we need to analyze how we as individuals react to similar traumatic situations. Indeed, in order to survive as a species, and more generally as living beings, our brain developed ways to learn from past situations in order to counter future threats more effectively. This can be explained through the experiential learning theory, which David Kolb, American educational theorist, further defined, with for instance the development of a four-step experiential learning model (ELM):

We can learn from this that, as human beings, we have the ability to learn from situations we were placed in, and later use that newly acquired knowledge to better assess present and future situations. In the case of African-Americans, or more broadly speaking, Black western communities, the information retained from the aforementioned events (Tuskegee, Rhodesia, South-Africa …) resulted in the emergence of reticence and diffidence towards Western healthcare organizations. A simplified version of this could be the following: Family A has been causing trouble to Family B. Family B learns to be cautious when interacting with Family A. Although Family A makes sure to maintain an honorable reputation amongst the general public, Family B knows, from generational experience, that Family A cannot be trusted. At the cost of being perceived by the general public as paranoid, sullen, or overly wary, Family B knows from experience that Family A can pose a threat to them. With this in mind, when the West suddenly claims, under the guise of an overused mask of self-righteousness, to care about “ethnic minorities”, it remains difficult to not take it with a pinch of salt.

While the past already teaches us a lot about the West and its literal use of black people as lab rats, the present teaches us even more. Indeed, in August of last year, the Bill & Melinda Gates Foundation awarded a US$15 million grant towards the trial of an experimental COVID-19 vaccine by Novavax in Johannesburg, South Africa. While this disease affects mainly the West (the United States being its number-one victim), it somehow seemed appropriate for Big Pharma to test its vaccine in a continent where the number of Coronavirus-related deaths is almost 11 times smaller as that of America (Africa: 194 840 deaths, America: 2 106 383 deaths — as per the data provided on September 2, 2021, by the European Centre for Disease Prevention and Control). This gives food for thoughts in regards to Africa being regarded by the West as its personal testing ground.

In addition, while examining the data currently available around healthcare, its accessibility and the quality of service delivered to different demographics, some disparities remain evident. When it comes to childbirth for instance, women of color die at higher rates than their white counterparts. The CDC in fact wrote in September 2019 that “Black, American Indian, and Alaska Native (AI/AN) women are two to three times more likely to die from pregnancy-related causes than white women – and this disparity increases with age, researchers from the Centers for Disease Control and Prevention (CDC) report today in the Morbidity and Mortality Weekly Report (MMWR).”

Similarly, according to the findings of the UK Confidential Enquiry into Maternal Deaths, the risk of death was five times bigger for black women (1 in 2,500) than for white women between 2014 and 2016 in the United Kingdom. Although each race has their respective predispositions in terms of health complications (preeclampsia being an example), the issue seems to rather lie in racial bias amongst healthcare professionals. Dr. Ana Langer, director of the Women and Health Initiative at the Harvard T.H. Chan School of Public Health in Boston in fact states that a significant portion of these deaths could be prevented. This issue, which she defines as a public health and human rights emergency, finds its roots in medical negligence. She further explains that black women are often undervalued, resulting in them not being monitored as closely as white women and in their symptoms to often be ignored.

Furthermore, with the recent and gradual merging of technology and healthcare, another issue emerges: that of algorithmic bias. Although AI remains a promising tool when it comes to simplifying arduous tasks, it is not devoid of dangers. Trishan Panch, co-director of the Applied Artificial Intelligence for Health Care program at the Harvard T.H. Chan School of Public Health, writes that “evidence also shows AI is also involved with important risks such as algorithmic bias. As individuals who develop AI carry implicit bias and health care systems exist in societies with prejudice, these biases end up being reflected in algorithms.”

Indeed, while most of us think of machines as objective, apolitical, neutral, and overall unopinionated objects, data shows otherwise. As machines are made, programmed, educated almost, by humans, they carry thoughts, principles, and ways to think proper to their creators. Majority of those creators in question being white men, the end product often turns out to be tainted with racial bias. In their study titled “Dissecting racial bias in an algorithm used to manage the health of populations”, Ziad Obermeyer, Brian Powers, Christine Vogeli and Sendhil Mullainathan show that an algorithm widely used across the industry and affecting millions of patients, exhibits significant racial bias: “At a given risk score, Black patients are considerably sicker than White patients, as evidenced by signs of uncontrolled illnesses. Remedying this disparity would increase the percentage of Black patients receiving additional help from 17.7 to 46.5%.” They further explain that bias arises from the fact that algorithms predict healthcare costs rather than disease, but unequal access to healthcare means less taxpayers’ money is spent on caring for black patients than on white patients. This study, published in the journal Science in October 2019, concludes that the algorithm is less likely to send black people than whites who are equally ill into programs aimed at improving the health of patients with complex medical needs. Hospitals and insurance companies use this algorithms along with similar ones to help manage the care of about 200 million people in the United States every year.

Such issues, to this day only addressed by a small fragment of scholars, researchers and healthcare representatives, demonstrate a clear lack of genuine care of Western healthcare systems for people of color’s overall health and wellbeing. Decades have passed and the pervasiveness of racial biases still costs too many people of color’s lives, leaving behind broken families and helpless children. The healthcare sector is part of a bigger system. A system which cannot be isolated from its number-one component: people. People make the system. If the system is racist, it is not the system which is to blame but rather its constituents, the people.

Meanwhile, people of color are now asked the trust this very system, which on multiple occasions failed them, and still continues to do so. How can we trust? Why should we trust? As they say “trust is earned, not given”. William Shakespeare himself wrote: “Don’t trust the person who has broken faith once.” Albert Einstein said: “Whoever is careless with the truth in small matters cannot be trusted with important matters.” Going from the very words of two white men, it doesn’t seem as trusting the oppressor would be the smartest option here. On top of having a right to bodily integrity, we as people of color need to keep in mind the relationship Western health organizations have had with people of color. I do not believe that it is in 2021 that the West is going to start caring. Nevertheless, we can. We can start caring about ourselves and make the choices that sit right with us. If the West demonstrated being capable of more harm than good towards black communities, then it is not merely mistrust that black communities are showing, but rather common sense.