cLINICAL TRIALS AND BLACK BREAST CANCER
CLINICAL TRIALS AND BLACK BREAST CANCER
A HISTORICAL CONTEXT
Let’s be honest, the history of medicine and the experiment on black bodies is full of horror stories. We know that black patients, especially women feel they are not listened to by their doctors. This causes delay and adds to their health risks, as much as it does their fears of seeking help in the first place.
It’s been a white superstition since African enslavement that black bodies either don’t feel pain or endure higher levels than others. This, of course, justified white European violence, whether sanctioned or not, through legal or social norms. Against that backdrop, doctors can consciously or otherwise believe black women exaggerate their medical complaints. This does sometimes cause a reaction in black patients deciding that they don’t want to waste the doctor’s time.
In a vicious cycle, the black woman may withdraw out of respect and thereby ignore her intuition, while the doctor feels affirmed that she was indeed wasting their precious time.
That’s why it’s important not to forget our history as black patients. The medical ethics of Dr Marion Sims, known as ‘the father of modern gynecology’, is a case in point. Sims caused untold suffering by surgically operating on enslaved black women without anesthesia because we apparently felt no pain.
The infamous syphilis study known as the Tuskegee experiment saw hundreds of black male bodies denied penicillin for 15 years because of the ‘white medical gaze’ and its fascination with watching the disease grow in them.
The special genetic cells of Henrietta Lacks was taken without her permission in 1950 and to this day, leaves her family still fighting for justice.
Unlike the US, the UK hid their experiments in the Caribbean, free to do almost as they pleased. That’s why it’s less well-known how British doctor John Quier (also a slave-owner) infected menstruating and pregnant women and children with smallpox to ‘strengthen them’.
This is not to ignore the medical apartheid of Europeans. We will never forget the French experiments on the body parts of Saarjie Baartman, a Khoikhoi, South African woman.
Nor Dr Eugen Fischer (1874 – 1967). He was a German professor of medicine, anthropology, and eugenics. He served as director of the Kaiser Wilhelm Institute of Anthropology, Human Heredity, and Eugenics. He was also the rector of the Frederick William University of Berlin. Fischer conducted medical experiments on enslaved children born from their raped Namibian mothers.
His conclusions that bi-racial children were “inferior” to their German fathers inspired Adolf Hitler, and in the 1930s, Fischer taught his racist theories to Nazi doctors. One of his students, Joseph Mengele, was responsible for the medical experiments in the Auschwitz-Birkenau camp.
Plus, we have today’s medical colonialism in Africa regarding the coronavirus. Two French medical experts in 2020 spoke of Africa being a testing lab.
Indeed, African poverty means the continent is trapped in a ‘Hobson’s Choice’. Obtaining expensive vaccinations is often compromised by ‘agreeing’ to be ‘white guinea pigs’ first.
It is no wonder that, on the one hand, Black African heritage women are dying of breast cancer at a 40 per cent higher rate than that of white women with the same diagnosis. And yet, black women make up a tiny per cent of those that participate in clinical trials.
CAN CLINICAL TRIALS FOR BLACK BREAST CANCER BE TRUSTED?
One of the reasons for the low participation of black women with breast cancer in clinical trials has been due to the lessor interest in the health of black bodies by medical professionals. This now seems to be changing.
There is a heavy emphasis on good health as dependent on private health insurance in the US. Yet, the healthcare of black African heritage women in the UK is comparable to the US despite it being a public health system. Not so surprisingly then, several research studies suggest, at least in part, that black breast cancer is due to structural racism i.e., unequal access to healthcare due to:
- Locality
- Environmental Exposure
- Education
- Financial constraints
Given an awareness of structural racism, should we be resisting participation in the clinical trials that call for black women with breast cancer to get more involved?
Frankly, it’s no secret that black women with breast cancer are severely underrepresented in clinical trials. The upside is that we’re not taking unnecessary risks with our health.
The downside is that we inevitably end up with, and I accept this is putting it crudely, with a ‘white drug’ to save our ‘black lives’. That’s a medication that has been compiled around the data and research of the participants being mainly white people.
ARE WE OKAY WITH THAT?
- If, for example, we believe structural racism is to blame for the disparities in black and white health, should we even care about researching for better drug treatments?
- There could be an argument for saying it’s even safer if only white women participate in clinical trials.
On the other hand, some research suggests there are fundamental differences in the breast cancers diagnosed for black people of African heritage.
- We are said to have a disproportionate presence of Triple-Negative Breast Cancer – a particularly aggressive type of breast cancer but we don’t know why.
- Although recently challenged, several studies have also suggested the mutated BRCA gene 1 and 2 is more prevalent in African heritage women and men than in white European people. If this is true, the biological/genetic reasons for it, also remain unknown.
I’m certainly not suggesting science should be creating racialised medication but there is something to question about the reliability of any drug if participation is not fully represented by those who are taking it.
For example, black people represent 13 per cent in the US, but if only 3 per cent participate in the clinical trials, the diversity of blackness across lifestyle, diet and age to name a few fundamental variations, may well be lost in the makeup of their fundings and therefore the compilation of that drug.
- Medicine is in the pursuit of evermore precision – to tailor-make your treatment because we know that disease is specific to the individual.
This doesn’t address the matter of trust and the historical mistreatment carried out by white researchers/doctors on their black patients.
WHERE DO WE GO FROM HERE?
As much as I have concerns about trusting doctors, I have had a very positive experience in my treatment. Because of that, I would take part in clinical trials. No doubt, if I had a terminal disease, my decision would be easier.
Like you, I’m concerned about the high rate of African heritage women dying of breast cancer and the current 40 per cent mortality rate is set to increase right up to 2040.
On all sorts of levels, we have to act for ourselves to protect our families. If taking part in clinical trials is part of a wider strategy, I think that could work
WITH THE FOLLOWING CONDITIONS,
- We take time to understand exactly what the research is and what it’s trying to achieve.
- That we see the researcher/doctor genuinely trying to build trust within our local populations.
- That we as participants are seen and respected as partners and no longer as mere ‘guinea pigs’.
- That our families be valued as an extension of the participant so that everyone is educated about the process and on the same page. Families need to be kept informed as to what is happening so that they can be our advocates where necessary. They have to have a voice.
- HISTORY MUST NOT REPEAT ITSELF. Researchers/doctors/oncologists etc. must commit themselves to generate an entirely different system and culture that leads with equitable access to create a diverse clinical trial community. If you are not made welcome and valued in their research, you should not regard the research as valuable enough for you to stay.
