The Dark Legacy of Scientific Research Using Marginalized Bodies
In 1969, around 21 Indian-origin women in the UK were reportedly given radioactive rotis to consume as part of a highly unethical research trial.
The issue, that first came to light in the 1990s, resurfaced when Taiwo Owatemi – Coventry MP and shadow minister for women and equalities in the UK – recently called for a statutory inquiry into this research that had attempted to study iron deficiency in the south Asian population by giving women chapatis containing an iron isotope, Iron-59, reported The Guardian. This trial, that was funded by the Medical Research Council (MRC) and conducted by professor Peter Elwood of Cardiff University, is one in a long line of historical instances where unethical research practices have abused women’s bodies – especially those belonging to the African American, Brown, or indigenous communities – in the name of scientific advancement.
A few of these women, who were identified in 1995 following an investigation by Channel 4 documentary titled “Deadly Experiments,” said that they had not given informed consent for the trial and were unaware of the use of radioactive isotopes, stated The Guardian’s report.
“My foremost concern is for the women and the families of those who were experimented on in this study,” Owatemi posted on X. “I know that there is deep worry among the south Asian community here in Coventry because of this… I am deeply disturbed that a community here in Coventry was targeted for research without them being able to give informed consent,” said Owatemi, who is currently working with academics from the University of Warwick to find these women.
The women are believed to have recently immigrated to the UK at the time and had limited knowledge of English. Following the documentary’s release, MRC conducted its own inquiry into the matter in 1998, finding that while “a serious attempt was made to inform study participants effectively … it is possible that, despite the best intentions of the research team, full details of the study were not grasped by the women involved.” The inquiry noted that the participants’ children were often asked to interpret and it was possible that the term “radiation” was not directly translatable in the dialects and languages spoken by the subjects.
According to The Guardian, the researchers measured the radiation levels of the women who consumed the radioactive rotis in order to gauge how much iron was being absorbed in the body. The MRC inquiry stated that the amount of radiation the subjects were exposed to was equal to three months of natural background radiation or exposure to a single chest X-ray at the time, and that the health risks of this were “very low.” However, Owatemi noted in her statement that no follow-up morbidity study had been performed to understand the long-term effects on the women’s bodies. The 1998 MRC inquiry added that the research subjects did not come forward “despite numerous avenues being pursued.” Further, the health visitor employed as the interpreter could not be located.
“Modern science was effectively built on a system that exploited millions of people. At the same time it helped justify and sustain that exploitation, in ways that hugely influenced how Europeans saw other races and countries,” wrote Rohan Deb Roy, a lecturer at the University of Reading. Medical science has greatly benefited by using the bodies of African American, Brown, and indigenous people for experimentation. In several such cases, however, informed consent was rarely taken and minimal efforts were made to follow-up with the subjects or provide them access to healthcare services. The names of the 21 women of Indian-origin are thus added to a long list of historical wrongs and unethical trials that have shaped our understanding of science and medicine. Some names are seared in modern science’s memory, while others have long been forgotten.
Most notable among the former is Henrietta Lacks, an African-American woman who was undergoing treatment for cervical cancer at the Johns Hopkins Hospital. Lacks’ cervical cells were harvested and sent for medical research in 1951 without her knowledge. While most cell cultures quickly perished in the lab, Lacks’ cells were unique in the sense that they continued to multiply, and were “immortal” as they did not show signs of aging. While Lacks died of cancer, her cells – termed “HeLa cells” – were shared widely and have since been used for groundbreaking medical research, including in HIV/AIDS, infertility, cancer and the polio vaccine, reported The BBC. Her family, who never received any compensation and have long fought for justice against the commercialization of Lacks’ genetic material, recently reached a settlement with the biotech company Thermo Fisher Scientific. As the lawsuit filed by Lacks’ family stated, “Too often, the history of medical experimentation in the United States has been the history of medical racism.”
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Although the medical exploitation of marginalized populations has brought recognition and laurels to several researchers and doctors in the past, the agony and pain endured by the subjects themselves is only now receiving due recognition. For instance, Dr. James Marion Sims, a physician in Montgomery, Alabama was lionized as the “Father of Gynecology.” However, his acclaim for developing a technique to deal with a childbirth complication was based on experimentation on at least seven enslaved Black women, noted the Equal Justice Initiative. He performed painful procedures without anesthesia or the consent of the enslaved women Lucy, Betsey, and Anarcha, among many others. His experiments often failed. However, he continued performing the procedures, with reports suggesting that Anarcha endured 30 such surgeries while Lucy nearly died of blood poisoning. A statue of the three women titled “Mothers of Gynecology” now stands in Montgomery, erected in 2022.
Another infamous case of research abuse is the Tuskegee syphilis study in the US, conducted upon 600 African American men who were recruited with the promise of free medical care. The scientists were tracking the disease’s progression that had no known cure at the time. But as the subjects developed complications, and even died, no care was offered to them.
Documents discovered at the National Archives, and later reported by The Guardian in 2007, revealed how military scientists had tested mustard gas on hundreds of Indian soldiers in what is now known as the Rawalpindi experiment. Many suffered burns. It was later discovered that mustard gas is carcinogenic, but those conducting the experiments failed to follow up with the soldiers to see if they had developed any illnesses. The trials were conducted by a chemical warfare research institution that wanted to determine how much gas was required on the battlefield to injure soldiers and whether the gas inflicted greater damage on Indian than on British skin.
Some say that such instances of neglect and exploitation, along with the difficulties many face in accessing medical care due to the inequalities and disparities that continue to persist, are one reason for the doubt and mistrust in the institution of science itself. Admittedly, guidelines for ethical research and trials have since progressed. In the recent case, a spokesperson from MRC told The Guardian, “The  report did recognise that research practice, ethics and regulation had moved on significantly since the studies were originally undertaken and made a series of recommendations… The inquiry directly resulted in new guidance, and additional improvements have been made since then.”
This recent case in the UK not only brings to light the troubling history of scientific research but also underscores the need to right historical wrongs and address the systemic injustices that have long shaped science and scientific culture.