Fictional creations like Frankenstein’s monster — authored by Mary Shelley in the early nineteenth century — and Rocky — from the 1975 cult classic The Rocky Horror Picture Show — become the face of mainstream culture every Halloween. But as we reminisce about our Halloween celebrations, it is important to remember that monstrous stories exist beyond our nightmares. 

In the modern day, scientific research on humans is seen as a carefully regulated practice. However, ethical standards in research were not always as stringent as they are today. 

Within the last century, several unethical research escapades, including the Tuskegee Syphilis study, targeted participants who were either entirely unwilling or enticed by financial compensation. Many subjects were not told by researchers what their participation would entail, leaving them unable to provide informed consent without the knowledge of the treatment’s benefits and risks. Often, minoritized groups were specifically targeted, contributing to community distrust of research and the underrepresentation of these groups.

Medical experimentation during the Holocaust and the Nuremberg Code

One of the most well-known examples of medical research malpractice is the experimentation performed on prisoners throughout the Holocaust. In concentration camps across Europe, German doctors subjected many prisoners to an array of inhumane experiments, many of which resulted in severe complications or death. 

One perpetrator of these crimes was Dr. Josef Mengele, a doctor and researcher at the Auschwitz-Birkenau concentration camp. He claimed to be interested in studying biochemical and physical traits that could be used to separate the races that the Nazis deemed “inferior.” 

 

Mengele targeted Roma and Jewish prisoners, who had been completely dehumanized by the Nazi party, and were not considered “human enough” to have ethics applied to them. Within these groups, Mengele pursued horrific experimentation, leading to extreme adverse effects and death.

Following the dissolution of concentration camps in 1945, Mengele fled to South America and passed away before facing consequences for his chief role in the criminal experimentation at Auschwitz-Birkenau. 

Unlike Mengele, many other German scientists were tried for their roles in inhumane experiments during the Nuremberg Proceedings, specifically USA v Karl Brandt et al. Throughout this trial, German doctors cited the differences between legal and illegal human experimentation, believing that this justified their inhumane acts.

As a result, in 1947, the Nuremberg Code was created, a list of 10 points defining ethical medical research; one of the first steps toward solidifying ethical standards in research. It outlined the importance of patient consent for experimentation and avoiding suffering and injury, stating that “the degree of risk to be taken [for patients] should never exceed that determined by the humanitarian importance of the problem.”

The Tuskegee syphilis study

On the other side of the world, in North America, medical research was not immune to racial discrimination and unethical scientific practices. In 1932, a group of 400 Black men with untreated syphilis living in Alabama took part in a study led by the US Public Health Service with the Tuskegee Institute. While this study was designed to last only several months, it became a long-term study that followed the participants for 40 years to follow the long-term natural progression of syphilis.

Not only were the participants uninformed of the duration of this study at its inception, but the researchers also did not make the goal of their study clear. Researchers incentivized subjects with the promise of free meals, medical exams and burial insurance, and were told they were being treated for their ailments, all while having no intention of administering any type of treatment.

In 1943, 11 years following the start of the study, the antibiotic penicillin became a widely available treatment for syphilis. The researchers did not offer the participants this treatment, leaving them untreated until the study finished in 1972 — decades after the creation of the Nuremberg Code. 

The unethical treatment by researchers in the Tuskegee study led to the establishment of the Belmont Report in 1979, which outlined the importance of respect for persons, ensuring their safety, and making a conscious effort to secure their well-being throughout medical studies. Soon after, Institutional Review Boards (IRBs) were put in place to oversee all research concerning human subjects. However, these new ethical standards could not reverse the negative impacts caused by Tuskegee on minoritized groups.

Addressing distrust in medical research

Unethical medical research throughout history has disproportionately impacted marginalized groups, specifically racialized people. A 2004 study by Murthy and colleagues published in the Journal of the American Medical Association found that Black and Hispanic individuals were significantly less likely to enroll in clinical trials compared to their white counterparts. 

Underenrollment in clinical trials appears to be directly linked to distrust in medical research, as a result of the mistreatment of marginalized groups in previous research studies. One participant who took part in a study on mistrust in research published in the Journal of Health Care for the Poor and Underserved in 2010 cited Tuskegee as a reason for their uncertainty about participating in research, stating that “awareness [about Tuskegee] is enough to stand up generation after generation.” Many other individuals in the 2010 study also expressed distrust as a result of mistreatment by medical providers caused by racial biases.

Underparticipation in medical research studies by minoritized groups contributes to a negative feedback loop. Less recruitment of minoritized groups means scientific results may not be applicable to those groups, leading to further distrust of researchers and medical professionals. Even with the establishment of IRBs and the Belmont Report in an effort to make research safer, researchers must ensure members of marginalized groups are both motivated and able to safely participate in research trials.

One approach to improve participation is Community-Based Participatory Research (CBPR), which integrates researchers and medical professionals into communities to build strong relationships before a study begins. Community Research Advisory Boards (CRABs) at several institutions across America work to address community-specific barriers that might impact participation, and ensure participants are well-informed about all relevant aspects of the study. Canada has similar initiatives, like the Institute Advisory Boards, that are present for each of the 13 Canadian Institutes of Health Research. Encouraging representation of minoritized groups in decision-making and research positions is also vital to begin to repair these relationships.

While research ethics have come a long way, the inhumane actions of researchers exploiting marginalized communities have had a negative impact for many generations, leading to mistrust and inadequate representation in research studies. 

When we think about ethics, it is important that we remember our history, which groups have been disproportionately affected, and the steps that we as science enthusiasts can take to make research a safe space for everyone.