The legacy of research on human subjects is marked not only by successes, but by grave and disturbing injustices. When learning about the Holocaust in high school, my class was horrified by the torture and murder the Nazis carried out in the name of “research.” Yet the Tuskegee Syphilis Experiment was never discussed. In 1932, the US Public Health Service began an experiment in order to examine the natural progression of syphilis by studying 600 impoverished rural Black male sharecroppers in Alabama. Two-thirds of the participants had contracted syphilis prior to the study, and the remaining third were not infected. The men were not told they had syphilis, and were not given treatment even after penicillin was found to be an effective and safe cure during the 1940s. The researchers led the participants to believe they were receiving free medical care–which were in fact placebo pills–as compensation for their participation. Despite the clear ethical violations of this study, it continued until a whistleblower exposed them in 1972. The subsequent outrage led to changes in U.S. law, but for the men and their families who had suffered tremendously and for those who had died as a result of the study, this had been too little too late.
The Belmont Report released in 1979 by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research outlined ethical principles for research in response to the Tuskegee exposure. Along with other recommendations, the Belmont Report made informed consent from participants mandatory and set a foundation for the creation of Institutional Review Boards. To explore the concept of informed consent, we can examine what it would’ve looked like in the case of the Tuskegee Experiment. The men would have had to be told exactly what the research entailed: they had syphilis, which would kill them if left untreated; syphilis is sexually transmitted and, therefore, their sexual partners would be at risk if they had unprotected sex; and the study would not provide them with treatment even if a cure was discovered. The men may not have agreed to participate in this study if they had known these facts, and this is why “informed consent” is so important. Additionally, researchers must provide information in a manner accessible to their participants. In order to ensure that these guidelines are followed, research institutions are required to have Institutional Review Boards that are meant to approve and continuously monitor research. But these improvements do not mean that there are no longer significant issues with research done at academic institutions.
Despite an increase in socioeconomic and racial diversity in higher education institutions in the United States, these gains have overwhelmingly been in undergraduate programs. The US Department of Education reported that the distribution of total doctorate degrees received in the US in 2008 were: 20% minority, 60% white, 12% international, 8% unknown. Doctoral students conduct research while working on their degrees and many choose research as a subsequent career path; therefore the research conducted in the United States is carried out by a disproportionately white population. This brings up many questions of how this disparity could affect both individual research labs as well as the overall climate of research in the United States. How are research design, motives, and funding affected when people of color or lower socioeconomic status are not in the room?
As a second-semester freshman at NYU, I worked as an intern at a research lab run by the university. I interacted with study participants on a daily basis, and those participants were mainly queer men of color, many with less educational opportunities and from low socioeconomic backgrounds. Additionally, the nature of the study meant that I discussed very sensitive information with participants. When a participant of mine arrived, I would meet them downstairs in the lobby. As we walked the hallways of NYU and into the research center, I would become aware, once again, of the expensive facilities at my disposal. I would be reminded of my evident privilege: that I was participating in this internship for free because I had no need for any monetary compensation. My family and education were already taken care of. I would remember that I was attending one of the most expensive universities in the world (and to add insult to injury, with a very poor financial aid program).
The lab in which I worked was at least aware of this tension. My supervisors and co-workers promoted an atmosphere that valued the participants’ safety and comfort above collecting data or completing assessments. The fact that the study involved such personal information meant that the greatest risk to participants was the psychological and emotional impact of revealing their stories; minimizing this was our number one priority. This went beyond confidentiality agreements and providing free snacks to what happened behind the scenes in the actual design of the research. For example, participants were asked to provide the zip-code of the place in which they “grew up.” In one meeting, someone suggested that this question—which to me seemed innocuous—was presumptive. What about participants who had experienced a high degree of mobility while growing up? Interns were trained to be entirely nonjudgemental. The reasons for this training were twofold. Firstly, showing judgement may have resulted in participants withholding information. Secondly, to be judgmental would overlook the environmental factors that may lead individuals to engage in high-risk behaviors.
This level of care is atypical when compared to the history of psychological research. First of all, most psychological studies were and continue to be conducted using only white, upper or middle-class college students. Regardless, the conclusions of these studies have been considered as applicable nationwide (and in some cases, worldwide), ignoring the privilege of a study’s subjects, the assumption that being white and upper middle-class is the “norm” to which others should be compared, and the systematic discrimination against marginalized groups. However, the studies that went beyond these “normative” populations and worked with marginalized populations (either within the US or by American research teams abroad) often entailed exploitation of these populations’ underprivileged circumstances. The lab in which I worked was aware of these facts and sought to have a representative cohort of study participants, ensuring the study itself was as inclusive as possible by actively combating ethnocentrism through consistent and careful consideration.
Although I have only worked in this one research lab, I feel comfortable assuming that this acknowledgement of privilege and systemic discrimination is not the norm in research labs across the country (and the world). I have a strong passion for psychological research, yet its problematic legacy is a source of concern for me. I worry that I—as a white, educated, upper middle-class individual—may be unable to conduct research in an effective or beneficial way due my position of privilege. But my experience as an intern helped me understand the role that I can have as an ally to people of color, low socioeconomic status, and other marginalized communities. I, and other privileged individuals, must acknowledge and understand our positionalities in order to educate ourselves and challenge injustice.
However, this is only a start. The high levels of awareness and thoughtfulness in the office were the result of having a much higher than average percentage of people of color working in the center both as interns and in positions of authority (compared to the doctoral degree statistics mentioned above). This is why increasing diversity in undergraduate higher education is not enough; there have to be more people of color and marginalized folx in the room in graduate and research contexts. Because I, as a privileged person, no matter how much I educate myself, still cannot speak for people of color, people of low socioeconomic status, disabled individuals, LGBTQ individuals, or other communities to which I do not belong.