Abstract
The idea of a committee like the Institutional Review Board (IRB), whose aim is to safeguard ethical research, sounds complementary to current principles of equity. However, many researchers and academics view these boards with animosity and distrust. Thus, the Chair of the IRB is well-suited to act as a servant-leader who addresses the needs of different stakeholders while creating awareness and communication between them all. Nevertheless, servant-leadership in ethics, particularly in an increasingly equity-minded culture, can carry some conflicts and paradoxes. This may be particularly salient for those from underrepresented backgrounds. The current case presents the experience of an IRB chair and woman of color from a socioeconomically disadvantaged background. Four organizational conflicts are observed: Mission, Efficiency, Equity, and Management. Solutions and recommendations are offered for each of these. The case closes with reflections on the person of color (POC) as a servant-leader.
TopOrganization Background
The institutional review board (IRB) is a mainstay at most academic institutions in the United States, and most universities worldwide boast some type of research ethics board. At its simplest, the goal of each institution’s IRB is to ensure that any research done on humans is done in a way that justly respects each participant’s autonomy and wellbeing. To do this, researchers must submit their proposed project for IRB review before commencing work. Similar to publication reviews, project proposals can undergo several rounds of revisions. Unlike publication reviews, project proposals are rarely flat-out rejected. Instead, IRBs may entertain as many revision rounds as necessary to ensure that a proposal is up to federal ethical standards.
Although many researchers appreciate this process as a way to improve their work ethically and academically, many others detest a process that they deem inconsistent and even obstructionist (Briggs, 2022; Moon, 2009). For example, researchers note that the process can hinder the kinds of rapid medical advancements that could be made for terminally ill patients and can be inappropriate for social science researchers who aim to survey people on relatively noncontroversial issues (Whitney et al., 2008). That both of these different areas of research should be subject to similar requirements for compliance means the IRB has lost its way and succumbed to mission drift or mission creep, according to many critics (Gunsalus et al., 2006; Hottenstein, 2018; Lynch et al., 2022).
However, despite this criticism, historical events offer a strong rationale for the presence of IRBs on university and research campuses. The first historical event that is often cited is the involuntary research done in Nazi camps during the Holocaust (1933–1945). This occurred recently enough that myriad videos and survivor accounts exist. For example, one survivor wrote:
Three times a week we were marched from Birkenau to Auschwitz, where we would go to Barrack 10. We were assembled, naked, in an enormous room. There, 10 or 12 doctors would study us. They measured parts of the body: the size of the mouth, the shape of the bones of the face and skull, and the colors of eyes and hair. We were compared to a chart in addition to each set of twins. Our bodies were marked with different color codes, and each doctor walked us around, continually taking notes. The “specimens” were photographed and catalogued. There was no way to protest and stay alive. (Mozes-Kor, 1992)
The second historical event that validates the IRB’s existence is the Tuskegee Syphilis Study (1932–1972). The presumed aim of the research was to examine the progression of untreated syphilis in patients. To do this, many poverty-level African American men were led to believe that they were receiving medical treatment when in fact they were not (Smolin, 2011). Again, this event is recent enough that there are descendant accounts available:
Q: Can you tell me a bit about what your father, Freddie Lee Tyson, was like?
A: He was a wonderful person. He was of strong character, and he loved his family. He didn’t even know he was a part of a study. He just knew he had the bad blood and they were recruiting. In Macon County, Tuskegee, there was an epidemic proportion of syphilis. My father wanted to protect himself and his family. (Jerkins, 2020)
Key Terms in this Chapter
Informed Consent: Ensuring that a prospective participant truly knows what the research entails before they choose to participate.
Institutional Review Board (IRB): A committee that reviews research proposals before they are carried out at universities, to ensure that they protect participants to the greatest possible extent.
Respect: One of the three guiding principles of the IRB (the other two are beneficence and justice ). Respect is shown for people by giving them a real choice to say yes or no, without coercion or threat.
Morals: A set of behaviors (specifically toward each other) that we, as an ever-changing community of humans, deem as right or wrong.
Beneficence: One of the three guiding principles of the IRB (the other two are respect and justice ). Beneficence is shown for people by ensuring that the methods to be used do not injure or harm.
Ethics: The process or method of discerning and reflecting on community morals.
Justice: One of the three guiding principles of the IRB (the other two are beneficence and respect ). Justice means not withholding basic benefits to individuals from targeted groups.
Social Justice: The aim to fix disparities observed in whole communities.