Is My Doctor Experimenting on Me?: A Black Physician’s Perspective

Last week while discussing an increase in the dose of a blood pressure medication with my 70-year-old African-Americal male patient, his daughter interrupted saying, “dad, why would you want to increase your medications when you feel fine, they really just experimenting on you anyway.” In some ways, I was shocked to hear this, but then again, not really because this is a prevalent perception among African-Americans, often accompanied by a general mistrust of the medical profession in general. 

I get it because I understand the history. Going all the way back to the 19th century, J. Marion Sims, who is often widely regarded as the father of modern gynecology, practiced surgical techniques on enslaved black women without anesthesia because he believed that they did not experience pain the same way others did. In the 1950’s, Henrietta Lacks had samples of both cancerous and healthy tissue extracted from her cervix to be used without her consent or knowledge in order to further medical research, even until this day. And then of course there was the Tuskegee Syphilis experiment which went on for 40 years. In this project performed by the Public Health Service from 1932 to 1972, unsuspecting, poor black male sharecroppers in Alabama had the treatment for Syphilis purposefully withheld from them so that the researchers could study the natural history of the disease, leading to numerous deaths and babies with birth defects. So um…yeah. Many of our people are aware of the past and this does not do wonders for their trust of the healthcare system.

But now I would like to set the scene back to modern day with myself, a young black man taking care of people from economically disadvantaged backgrounds with oftentimes a low level of health literacy. My brand is built on the premise of trust, but perhaps I am being pretentious to assume that I can earn that automatically just because I look like them. After all, I’m just another talking white coat using big medical terms (I promise that I try not to overdo it), prescribing Western medicines, and operating off a bureaucratic stronghold not designed to place these patients first. Given all of that, I feel like I should at least attempt to give a response to the question of whether black folks are being experimented on in 2019.

The short answer to the question is that many times, patients are being experimented on, technically. But this applies to pretty much everyone, regardless of race, sex, or status. An example of this is what we in the medical world refer to as empiric therapy. Let me explain…

Let’s say patient X, a 60 year-old, comes in with a cough, high temperature, and is bringing up mucus for the past week. They have not responded to any over the counter medications. We examine them and are highly suspicious of pneumonia, a bacterial infection of the lung, but do not have the means to get them a chest x-ray at that exact moment. Many doctors would prescribe this patient an antibiotic without knowing for sure whether or not they have pneumonia. 

In some ways, this patient is being experimented on because the doctor is taking an educated guess (sort of like an hypothesis) and putting it to the test by giving them a medication just to see if it works and makes them feel better. But it would be hard for anyone to argue that the doctor means any harm (and many patients would usually insist on this course of action).

In reality, we can pretty much apply this to any medication we prescribe or procedure we perform because every patient is unique and we don’t know how they are going to respond to any treatment we provide for them, but we still give it anyway and wait to see what happens, because the potential benefits outweigh the risks. 

What about clinical trials and studies on human subjects? These are still taking place right? 

Absolutely, and as a matter of fact, drugs cannot get to the market without experiments being performed on humans to make sure they are safe and effective. 

Well, why not just test them on animals? Wait…we don’t wanna harm and exploit the animals though, right? 

I lost track, but I would think that you probably would not want to take a medication without knowing how other people have reacted to it in the past. 

Okay, well aren’t there some shady practices taking place when blacks are used for these studies? 

What I can say is that in 2019, in order for any subject to be used in a study, they must give consent (with a few exceptions) and anybody performing research with human subjects needs to get approval from a body called the institutional review board (IRB). From my experience, these folks take their job of ensuring that research is ethical very seriously, and the requirements that exist today came about in response to the medical research cases previously mentioned in this article. 

Now, having said that, I’m sure that not all informed consent being obtained from subjects is truly ‘informed’ when dealing with those with low health literacy. Also, when financial incentives are involved, people tend to jump at an opportunity to be a study subject even without completely understanding what they are getting into. Lastly, medications like chemotherapy undergo speedy clinical trials in the hospital and are tested on patients with advanced illnesses with little knowledge of what the outcome will be. One could argue that feelings of desperation and vulnerability are being taken advantage of in such a scenario.

So should we as black people just avoid experimentation at all costs? Please don’t. Because as of right now, I can make the argument that we are not being experimented on enough in some cases. Take for example prostate cancer screening in men. In 2012, the United States Preventive Services Task Force (USPSTF) issued new guidelines recommending against screening in all men. However, the studies that they went by to issue these recommendations had a disproportionately low amount of black or African-American patients, even though we have 60% more cases of prostate cancer than any other group and die at rates 2-3 times higher than Caucasians from this disease. Wouldn’t you want smart doctors and scientists to study us in greater detail to see whether we should have a separate set of guidelines? Well, guess what? That would involve experimenting on us. 

So what are you saying brotha? Don’t allow the fear of being experimented on form a barrier between you and the care that you can receive from your doctor. Don’t be afraid to ask questions if you don’t understand (many of my patients walk out of the specialists office confused and come to me to clarify things for them, which is fine too). Be an advocate for yourself, your friends, and your family. I can’t speak for all doctors and say that everyone has your best interests at heart, but the overwhelming majority of us do. We’ve learned from history. Just keep in mind that medicine is complicated and sometimes there is absolutely no way around trial and error. But bear with us, and some amazing things can happen.