Drawing the Line Between Experimentation and Exploitation: The Case against Johns Hopkins University and the Enduring Legacy of the Tuskegee Experiments

​​The lawsuit’s defendants are listed as Johns Hopkins University, their various affiliated medical institutions, the Rockefeller Foundation, and Bristol-Myers Squibb Company, a New York-based pharmaceutical company. The complaint alleges that prominent John Hopkins faculty members participated on a government committee that reviewed funding applications, making them complicit in conducting the research itself. The complaint goes on to allege that the Rockefeller Foundation funded research initiatives taken by Johns Hopkins in this capacity, including employing scientists who monitored the experiments. Lastly, Bristol-Meyer Squibb has also been implicated through allegations that the pharmaceutical company supplied drugs for the experiments.

According to repor​t compiled by the Presidential Commission for the Study of Bioethical Issues, a National Research Council subcommittee was responsible for approving the research project. The studies moved forward once it received grant funding from the United States National Institutes of Health to the Pan-American Sanitary Bureau (formerly known as the Pan-American Health Organization). The studies were eventually carried out by the U.S. Public Health Service. While the results were never published, public knowledge of the Guatemalan experiments is not new; as early as 2010, then-Secretary of State Hillary Clinton apologized for the experiments, calling them “clearly unethical.” The Presidential Commission subsequently compiled the report for President Barack Obama, detailing the Commission’s investigation into the matter.

According to the Presidential Commission, the initial intent of the study was to find and examine new ways to prevent STDs. However, the methods utilized to do so magnify the gross ethical implications arising from otherwise respectable experiments. For example, the first experiments conducted are said to have involved infecting prostitutes with various diseases and then allowing them to have sex with soldiers or prison inmates. Upon contracting such a disease, the medical research then focused on the newly infected subjects. At least 1,500 study subjects were involved in such practices, including orphans and psychiatric patients. The crux of the allegations state that none of the subjects were informed of their infections, causing some to die or pass on the disease to their spouses, sexual partners, and children.

This is not the first time the study’s victims have attempted to utilize the court systems. In 2012, the plaintiffs sued eight government officials over the study, but the complaint was dismissed by a federal judge on the basis that the “government could not be held liable for actions committed in another country.” A new lawsuit was filed in Baltimore as a result.

The case against Johns Hopkins brings to light similar claims of ethical abuse in the medical field. Perhaps the most prominent example is that of the Tuskegee Syphilis Study in Macon County, Alabama, also conducted by the United States Public Health Service. In the Tuskegee Study, a community of black men were infected with syphilis to serve the purpose of “determin[ing] the natural course of untreated syphilis in black males” versus that of white subjects. The participants were left believing they were given appropriate care, but were instead given placebos. Approximately 400 men were involved in the project, with published reports of the study beginning in 1936 and extending until 1960. The study continued despite the fact that penicillin had become generally available towards the end. After various news stories broke regarding the inhumane and unethical study, the United States attempted to remedy the injustice committed on their behalf with the passage of the National Research Act, which created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. However, the United States did not accept responsibility to the participants until 1997, when President Bill Clinton issued a formal apology.

These horrifying legacies of medical research have had major implications for the sciences as well as the nation at large. It has been widely recognized that the legacy of the Tuskegee study has led to a distrust between American minorities and the biomedical research field. According to studies conducted by the Tuskegee Legacy Project, African Americans are more likely than white Americans to fear participation in medical experiments. This is particularly plausible given that the “medical community in the United States was aware of the experiments throughout the course of the study”, with at least “thirteen articles…published documenting the results and course of inquiry”.

The complaint also emerges at an interesting period for the United States, given the most recent events regarding interactions between American minorities and the police department. However, this complaint also presents an even more disturbing view of the role of medical research in not only perpetuating domestic racial discrimination, but often their direct role or complicity in undiscussed or often buried histories of colonialism abroad, particularly in Central and South America. While the lawsuit is relatively fresh procedurally, it encourages a discussion and re-evaluation of medical ethics, a re-emerging field of study in light of exciting biomedical developments regarding genetic therapies and new ways of thinking about medicine.  It also further emphasizes the intersection between medicine, culture, and politics, demonstrating that science is never truly, objectively removed from society at large; rather, it is very much informed by those who define the parameters of the practice from the very beginning. 

Samantha Grund-Wickramasekera is currently a law student and Jaharis Health Law Fellow at DePaul University of College of Law. Ms. Grund-Wickramasekera completed her Bachelor of Arts at DePaul University, double majoring in Political Science and Women's and Gender Studies, minoring in LGBTQ Studies in 2014. She will complete her law degree in 2017.​​​