Tuskegee Syphilis Study Research Articles

The Tuskegee Study of Untreated Syphilis: A Case Study in Peripheral Trauma with Implications for Health Professionals.

Racially or ethnically targeted events may have adverse health implications for members of the group not directly targeted, a phenomenon known as peripheral trauma. Recent evidence suggests that mass incarceration, police brutality, and immigration actions all have such effects, as did medical exploitation by the US government during the Tuskegee Study of Untreated Syphilis in the Negro Male. We summarize recent findings in the economics literature on population-level effects of the Tuskegee study, including a decline in health-seeking behavior and a rise of both mortality and medical mistrust among African-American men not enrolled in the study. We highlight the relevance of our findings for present-day racial health disparities. Practitioner awareness of peripheral trauma is an important element of cultural competency. But among options to substantially improve minority trust in the healthcare system, the diversification of medical practitioners may hold greatest promise.

Ethical considerations in the design, execution, and analysis of clinical trials of chronic pain treatments.

Introduction:In the field of pain research, clinical trials may randomize over 500 subjects and include more than 150 sites spanning over a dozen countries.Methods:This review examines the ethical considerations affecting clinical trial design, execution, and analysis of trials for chronic pain. The Belmont Report has been the touchstone for human studies protection efforts since 1979. Commissioned by the U.S. government in response to ethical failures in medical research, such as the Tuskegee Syphilis Study, the report emphasizes 3 basic principles: respect for persons, beneficence, and justice. Trial design and sample size have important ethical implications.Conclusions:Measures to enhance trial transparency and combat publication and many other types of bias should be implemented.

Whose Responsibility Is It to Dismantle Medical Mistrust? Future Directions for Researchers and Health Care Providers

Medical mistrust persists and appears to be growing. The public health literature on medical mistrust has largely focused on mistrust among Black and African American populations due to legacies of abuse and mistreatment, such as the infamous Tuskegee Syphilis Study. However, research is now emerging that explores mistrust among various populations and in varying contexts, and the literature now largely emphasizes the role of ongoing, present-day social and economic inequalities in shaping and sustaining mistrust, particularly among populations who experience staggering health disparities. This special issue showcased nine articles exploring medical mistrust among diverse populations, exploring a wide array of topics and spanning myriad methodologies. In addition to a rigorous systematic review of the literature, this issue covers several critical subareas of the health disparities literature, including preventative health screenings among Black men, discrimination and cultural factors among rural Latinx communities, health care satisfaction among Latina immigrant women, the complex relationship between HIV testing and “conspiracy beliefs” among Black populations, pre-exposure prophylaxis use among transgender women, the impacts of mass incarceration on HIV care, eHealth interventions to address chronic diseases among sexual minority men of color, and participatory research to engage underserved populations as co-researchers. The purpose of this article is to provide a brief summary of the nine manuscripts in this special issue and to outline some recommendations and future directions for research on medical mistrust.

The Relevance of the Belmont Report to Research Using Animals

Abstract Prejudice (unjustifiable bias) in the selection of the subjects of scientific research is morally unacceptable. Indeed, the occurrence of prejudice in the Tuskegee Syphilis Study prompted the production of the Belmont Report, setting out the basic ethical principles for the protection of human subjects of biomedical and behavioral research. The relevance of the Belmont Report to the protection of all animal subjects of scientific research is discussed.

Bill Jenkins: epidemiologist and activist who blew the whistle on the US government’s Tuskegee syphilis study

Photo courtesy of the American Friends Service Committee William (“Bill”) Carter Jenkins was born in Mt Pleasant, South Carolina, in the US, in 1945, the son of Albert Jenkins, an...

The Captive Lab Rat: Human Medical Experimentation in the Carceral State

Human medical experimentation using captive, vulnerable subjects is not a relic of our American past. It is part of our present. The extensive history of medical experimentation on the disabled, the poor, the mentally ill, and the incarcerated has been little explored. Its continuance has been even less discussed, especially in the legal literature. The standard narrative of human medical experimentation ends abruptly in the 1970’s, with the uncovering of the Tuskegee syphilis study. My research shows, however, that this narrative is incorrect and incomplete. The practice of experimenting on the captive and vulnerable persists, not just then but now. Our current approach to human medical experimentation disregards informed consent and privacy, allowing the pharmaceutical and medical industries to play an outsized role in shaping clinical research. The confusing amalgam of laws, rules and codes loosely governing such research almost entirely fail to regulate or prevent patient mistreatment and abuse. Acquiring a true understanding of our system of mass incarceration requires us to unearth the hidden contours of our current experiments on the poor, the disabled, and the confined, and calls for a wholesale revision of the flawed legal and medical regime overseeing human medical experimentation.

Driving Miss Evers’ Boys to the Historical Tuskegee Study of Untreated Syphilis

The Tuskegee Study of Untreated Syphilis (TSUS) intersects racial and research ethics discourse in medicine and public health. Miss Evers’ Boys is a fictionalized play of the 40-year TSUS. In 2016, the Cultural Programs of the National Academy of Sciences and the Shakespeare Theatre Company in Washington, DC co-sponsored a reading of the play at the National Academy of Sciences Auditorium. Ethics instructors and students, who may use the play for research training and professional development, may lack awareness of a pattern of deviations from the TSUS historical record. This may compromise what instructors and students teach and learn, respectively.Historical analysis revealed that the playbill—handed to play patrons—had challenges in the core arguments about the TSUS, particularly the notion of “bad blood.” A broad collection of documents from a variety of sources—documents concurrent with the TSUS—illustrated how the term, “bad blood” was used. Bad blood was syphilis and syphilis was bad blood. “Bad blood as syphilis,” in post-hoc reviews, was suppressed and nullified. In another area, the focus on the denial of penicillin at the Birmingham Rapid Treatment Center (RTC)—an important scene in the play and the history of the TSUS—exposed conflicts with the historical record. The origin and the devices that developed this image also were disclosed. The article specifically exposed, unraveled, analyzed, and challenged other misinformation and paradigm-defining misconduct.The TSUS narrative requires correction by the responsible historical and ethical communities, changing what is taught about the TSUS and Miss Evers' Boys. This is critically important in academic research training and professional development. If left unchallenged, the faulty TSUS scholarship—coupled with Miss Evers’ Boys—fuels and reinforces the incorrect standard narratives of the TSUS and their impact on the history of the TSUS. This is especially true regarding what the TSUS men were told about their diagnosis—bad blood and not syphilis—and the denial of “a hip shot of that penicillin” at the RTC.

Review of the Captain America Graphic Novel ‘TRUTH: Red, White and Black’ Focusing on Parallels with the Infamous USPHS Syphilis Study at Tuskegee

This review presents the first detailed presentation of the parallelism between the Tuskegee Syphilis Study and the Captain America graphic novel ‘TRUTH: Red, White and Black’, published as a graphic novel by Marvel Comics in 2004 as a paperback, and then in 2009 as a hardcover. First written, published and distributed monthly in 2003 as pre-sequel seven comic book series to tell the story of the origins of the WWII superhero Captain America. In 2003, Marvel Comics chose to tell a ‘very dark story’ to explain the origins of Captain America, a half century after the initial introduction of Captain America as a WWII action hero in 1940. By detailing—for the first time—nine parallel aspects between these two storylines, this review demonstrates how Marvel Comics brought the tragic Tuskegee Syphilis Study story into the popular press, thus reaching an audience far beyond traditional bioethics academicians. This review is intended to stimulate and guide classroom discussions on the ethical issues at the core of the infamous Tuskegee Syphilis Study allowing bioethical issues to be made more accessible to the general public, via school curriculums, by the use of graphic novels.

Ethical Responses to Modern Clinical Trials on Human Subjects: A Comparative Perspective

With the modern advances and technological breakthroughs in biomedicine, scientific experiments involving human subjects had increased. Since the American gynecologist Marion Sims (d.1883), who conducted a scientific research on some selected African women suffering from prolapsed uterus disease, or American physician Walter Reed’s (d.1902) team who gave germs of yellow fever to 22 human subjects to test if fever is transmitted by particularly mosquito species, as well as the Tuskegee Syphilis Study that was conducted from 1932 until 1972, or the scientific experiments conducted by Nazis of Germany on large numbers of prisoners, clinical trials on human subjects have become part of the scientific activities. These and many other scientific experiments conducted on human subjects had shown the extent of potential threats of unregulated scientific experiments on human life. Serious moral and legal concerns are then raised towards the morality of these activities. These concerns covered four major areas; safety, sanctity of the human body, consent and validity of experiment. This paper uses textual and analytical methods and aims to review Muslim jurists’ opinions on the permissibility of conducting clinical researches that uses human subjects. The opinions of the Muslim jurists are then compared to that of bioethical codes and declarations such as the Nuremberg Code, coined in (1947) and the Helsinki Declaration that was formulated by World Medical Organization in 1964. Fiqh and legal literature on this subject is exposed, and the moral contents of such writings are analyzed. The study is expected to come up with a comparative account of conventional and Islamic responses to modern clinical trials on human subjects.

The Limits of Confidentiality: Informed Consent and Psychotherapy.

The Limits of Confidentiality: Informed Consent and Psychotherapy.

Upholding “Colonial Unknowing” Through the IRB: Reframing Institutional Research Ethics

This article considers the institutionalization of research ethics as a site of “colonial unknowing” in which the racial colonial entanglements of academic research and institutions are obscured. I examine the origin stories situating Institutional Review Boards (IRBs) as a response to cases of exceptional violence, most notably the Tuskegee syphilis experiment, within an otherwise neutral history of research. I then consider how the 2018 revisions to the Common Rule extend “colonial unknowing” by decontextualizing the forms of risk involved in social and behavioral research. I situate these complicities as necessary starting points toward anticolonial research ethics of “answerability.”

The Belmont Report at 40: Reckoning With Time.

It was the summer of 1972 when a stunned nation first learned of the infamous Tuskegee Syphilis Study, during which hundreds of poor, disease-stricken black men from Macon County Alabama, had been deliberately left untreated for 40 years. Coming on the heels of multiple, earlier examples of unethical human experimentation, the Tuskegee Syphilis Study made it plain that the moral foundation of human subject research was in desperate need of repair. Blind reliance on the Nuremberg Code and the Declaration of Helsinki was no longer going to suffice. It was against this backdrop that Congress resolved to act. Numerous hearings and multiple spirited discussions later, an agreement was struck to constitute the "Commission." The outgrowth of a retreat held at the Smithsonian Institution's Belmont Conference Center, the Belmont Report lays out a principled analytical framework to "guide the resolution of ethical problems arising from research involving human subjects." Durable and ever-present, the Belmont Report, which is the foundational document that reset the ethics of human subject research, must now reckon with all-important novel issues of the day that could not have been foreseen by its drafters.

Bioethics and the law: Should courts be allowed to make end of life decisions? Reflections on the Charlie Gard and Alfie Evans controversies

Summary This article will examine whether courts should have the power to decide to withdraw life-sustaining treatment over the objection of surrogate decision-makers. In doing so, I consider the ways in which giving courts this power might be better for individual patients, but worse for family members and other stakeholders who must live on after the patient's death. I also examine some of the cultural and historical reasons that handing such power over to courts or other government agencies may be seen as unthinkable in the United States, namely, moral transgressions like the Tuskegee Syphilis Experiments, which have given the public significant reasons to be wary of government intervention in healthcare and life-or-death decisions. Drawing on the Charlie Gard and Alfie Evans cases, bioethical theory, political philosophy, and my experiences as a clinical ethicist, I conclude that courts should not have the power to withdraw life-sustaining treatment over surrogate objection in most cases because doing so creates significant chaos, fear, and distress in patients and their families, and that taking positive stances on end of life issues violates the principles of liberal democracy, under which intimate decisions about the unknown should be left to patients and their surrogates. Unless surrogates are preventing a patient who is very likely to be physically suffering or who wishes to die from doing so, giving courts such power is likely to create significant moral distress that could be avoided or solved by facilitating transparent communication.

"Who's Really Regulating? Who's Benefiting?" Exploring Black Stakeholders' Awareness and Trust in the Food and Drug Administration's Role as a Tobacco Regulator

Blacks/African Americans have experienced direct public health harm from US governmental agencies (eg, police violence, Tuskegee syphilis experiment) that may influence perceptions of the trustworthiness of government messages regarding tobacco products. Consequently, we sought to explore Black Americans' awareness of and trust in the FDA's role as a tobacco regulator. Data were from 2 focus groups conducted with a purposive sample of 23 Black stakeholders in Los Angeles, California. Discussions were audio-recorded and transcribed verbatim for analysis. Although most (N = 14; 61%) participants were aware of the FDA's role as a tobacco regulator, they all noted that the Black community in Los Angeles is not aware. Recurrent across the focus groups were discussions about distrust in the FDA with 4 main contributing factors: (1) that the FDA is influenced by the tobacco, agricultural, and pharmaceutical industries; (2) that the FDA is influenced by money and politics; (3) that the FDA is a bureaucracy exercising monopoly and power; and (4) that the FDA lacks technical capacity and competence to regulate tobacco products. Study findings highlight opportunities for the FDA to increase awareness and build trust in their tobacco regulatory role through communication campaigns targeted at Black Americans, and community engagement with Black stakeholders.

HIV-related ‘conspiracy beliefs’: lived experiences of racism and socio-economic exclusion among people living with HIV in New York City

HIV-related ‘conspiracy beliefs’ include ideas about the genocidal origin of HIV and the nature and purpose of HIV-related medications. These ideas have been widely documented as affecting myriad health behaviours and outcomes, including birth control use and HIV testing. Most HIV-related research has quantitatively explored this phenomenon, and further qualitative research is necessary to better understand the complexity of these beliefs as articulated by those who endorse them. Moreover, public health in general has over-emphasised the role of the Tuskegee Syphilis Study in explaining mistrust, rather than focus on ongoing social inequalities. Twenty-seven semi-structured interviews were conducted with low-income Black and Latinx people living with HIV who were currently, or had been recently, disengaged from HIV medical care. Beliefs about the role and intentions of the government and pharmaceutical industry in the epidemic highlighted the racism and classism experienced by participants. Notably, however, HIV care providers were not perceived as part of the government–pharmaceutical collusion. Interventions should focus on fostering positive beliefs about HIV medication and building trust between HIV care providers and populations that have experienced ongoing social and economic exclusion. Replacing the phrase ‘conspiracy beliefs’ with more descriptive terms, such as HIV-related beliefs, could avoid discrediting people’s lived experiences.

From in vivo to in vitro: How the Guatemala STD Experiments Transformed Bodies Into Biospecimens.

The US Public Health Service's Guatemala STD experiments (1946-1948) included intentional exposure to pathogens and testing of postexposure prophylaxis methods for syphilis, gonorrhea, and chancroid in over 1,300 soldiers, commercial sex workers, prison inmates, and psychiatric patients. Though the experiments had officially ended, the biospecimens collected from these subjects continued to be used for research at least into the 1950s. We analyzed historical documents-including clinical and laboratory records, correspondence, final reports, and medical records-for information relevant to these biospecimen experiments from the US National Archives. In addition, we researched material from past governmental investigations into the Guatemala STD experiments, including those of the US Presidential Commission for the Study of Bioethical Issues and the Guatemalan Comisión Presidencial para el Esclarecimiento de los Experimentos Practicados con Humanos en Guatemala. Identified spinal fluid, blood specimens, and tissue collected during the Guatemala diagnostic methodology and intentional exposure experiments were subsequently distributed to laboratories throughout the United States for use in ongoing research until at least 1957. Five psychiatric patient subjects involved in these biospecimen experiments died soon after experimental exposure to STDs. The same US government researchers working with the Guatemala biospecimens after the exposure experiments ended were also working with specimens taken from the Tuskegee syphilis study. There should be a complete public accounting of whether biospecimens from the Guatemala and Tuskegee experiments are held in US government biorepositories today. If they still exist, these specimens should be retired from such biorepositories and their future disposition determined by stakeholders, including representatives from the communities from which they were derived.

Comparative use of Tuskegee Syphilis Study Film vs. Text Triggers to Teach Bioethics: The Spheres of Ethics Teaching Using Film (SOETUF) College Study

The overall goal of this study was to determine whether one could demonstrate a measurable difference between the use of film vs. text exposure triggers-using documentary materials about the infamous Tuskegee Syphilis Study-in the teaching bioethics to college students using the 36-item ‘Spheres of Ethics Teaching Using Film’ Post-Trigger (SOETUF P-T) Questionnaire, as developed for this study. The results revealed statistically significant differences between the film vs. text groups for the overall Principles of Bioethics Domainof- Interest (7.3±4.4 vs. 5.1±4.4, p <0.05) with the film group scoring higher and for the 23-item ‘Emotional Reaction Domain-of-Interest’ (ER-DOI) with two of the five emotional components identified by a Principle Component Analysis (PCA), the components of being Content and Aroused, but not for the other three identified components of Unhappy, Afraid or Excited. Moreover, the SOETUF P-T Questionnaire items appeared to have reasonable face validity as revealed by the answer patterns to its range of items. In this study, the SOETUF P-T Questionnaire demonstrated that it could detect meaningful differences in student reaction to a film trigger versus a text trigger about the Tuskegee Syphilis Study in the teaching of bioethics to college students.

Qualitative and Quantitative Comparative Review of Two Documentary Films on the Tuskegee Syphilis Study for Teaching Bioethics: Bad Blood vs. The Deadly Deception

Qualitative and Quantitative Comparative Review of Two Documentary Films on the Tuskegee Syphilis Study for Teaching Bioethics: Bad Blood vs. The Deadly Deception

Historical Origins of the Tuskegee Experiment: The Dilemma of Public Health in the United States.

The Tuskegee Study of Untreated Syphilis in the Negro Male was an observational study on African-American males in Tuskegee, Alabama between 1932 and 1972. The U. S. Public Health Service ran this study on more than 300 people without notifying the participants about their disease nor treating them even after the introduction of penicillin. The study included recording the progress of disease and performing an autopsy on the deaths. This paper explores historical backgrounds enabled this infamous study, and discusses three driving forces behind the Tuskegee Study. First, it is important to understand that the Public Health Service was established in the U. S. Surgeon General's office and was operated as a military organization. Amidst the development of an imperial agenda of the U.S. in the late 19th and early 20th centuries, the PHS was responsible for protecting hygiene and the superiority of "the American race" against infectious foreign elements from the borders. The U.S. Army's experience of medical experiments in colonies and abroad was imported back to the country and formed a crucial part of the attitude and philosophy on public health. Secondly, the growing influence of eugenics and racial pathology at the time reinforced discriminative views on minorities. Progressivism was realized in the form of domestic reform and imperial pursuit at the same time. Major medical journals argued that blacks were inclined to have certain defects, especially sexually transmitted diseases like syphilis, because of their prodigal behavior and lack of hygiene. This kind of racial ideas were shared by the PHS officials who were in charge of the Tuskegee Study. Lastly, the PHS officials believed in continuing the experiment regardless of various social changes. They considered that black participants were not only poor but also ignorant of and even unwilling to undergo the treatment. When the exposure of the experiment led to the Senate investigation in 1973, the participating doctors of the PHS maintained that their study offered valuable contribution to the medical research. This paper argues that the combination of the efficiency of military medicine, progressive and imperial racial ideology, and discrimination on African-Americans resulted in the Tuskegee Syphilis Experiment.

Tuskegee as Sacred Rhetoric: Focal Point for the Emergent Field of African American Religion and Health.

Scholars in African American religion engage the Tuskegee Syphilis Study as the focal point of the African American experience in institutional medicine. Seeking a way forward from this history and its intentional evil, the author proposes to position Tuskegee as a form of Lynch's culturally contextual sacred rhetoric to make use of its metaphoric value in the emerging field of African American religion and health. In this broader meaning-making frame, Tuskegee serves as a reminder that African American religious sensibility has long been an agential resource that counters abuse of the Black body. It also acknowledges the complex decisions facing African American clinical trial participants.