The year 2020 has pushed medical trials to headline news, as the world has searched desperately for a COVID-19 vaccine. But while the practice of medicine and medical experimentation are often characterised as humanitarian pursuits, they have a chequered history. During World War Two the Nazis experimented on – indeed, tortured – concentration camp inmates. In response to these atrocities, the Nuremberg Code of Medical Ethics was developed, instituting the requirements for scientists to protect the welfare of medical trial participants, and for participants to be able to protect themselves through informed consent and the right to withdraw from trials.
This did not, however, overturn the racism and discrimination entrenched in medical research, as numerous experiments conducted throughout the twentieth century demonstrate. The “Tuskegee Study of Untreated Syphilis in the Negro Male” ran from 1932-1972, initially involving 600 black men, 399 of whom had syphilis and 201 who did not. The “participants” received free medical exams, meals and burial insurance in exchange for taking part, but were misled about the conduct of the study. The men were never treated, even after 1947 when penicillin became the standard drug for syphilis. As a result, the men’s partners and children were also infected by the disease. In July 1972 the study became public knowledge and caused an outcry.
From 1953-1964 the CIA also conducted a clandestine research project, known as MK-ULTRA, involving administering LSD to subjects without their consent. The premise of this experiment was to develop a drug that would allow for agents’ minds to be controlled, by inducing amnesia, for example, so that agents could forget who gave them orders. Many of those experimented on were prisoners and, more broadly, most clinical trials conducted in the US until the 1970s involved prisoners. According to US journalist Stephen Kinzer, MK-ULTRA was a continuation of work carried out in Japanese and Nazi concentration camps; for the project the CIA even consulted the torturers who had worked in those camps.
Furthermore, back in 1951, Johns Hopkins University researchers had harvested the cells of Henrietta Lacks, an African American woman who was suffering from advanced cervical cancer. Lacks had given birth to her first child at fourteen, was descended from slaves and lived in a community still centred on the cultivation of tobacco. At 31, the mother of five was diagnosed with metastatic cervical cancer. In the hospital, doctors noticed that her cancer cells grew at a rapid rate; in culture they not only survived but continued their remarkable growth. These cells, which became known as the HeLa cell line, were distributed to researchers all over the world and were subsequently used in ground-breaking research, including the development of the polio vaccine.
Journalist Rebecca Skloot interviewed the Lacks family throughout the late 1990s and 2000s when she was conducting research for her book The Immortal Life of Henrietta Lacks. Most of the information about the experiments involving the HeLa family had been kept from Lacks’ descendants. Lacks’ daughter Deborah, who was two-years-old when her mother died, asked Skloot “if our mother cells did so much for medicine, how come her family can’t afford to see no doctors?”
Thus, as the journalist Chip Jones states in his new book The Organ Thieves:
“[c]ontroversies and conflicts over stealing human remains under the cover of night and in the name of scientific progress have a long, violent history.”
The Organ Thieves chronicles the disturbing circumstances of the first heart transplant in the American south. Bruce Tucker was a 54-year-old African American who worked in an egg processing plant in Richmond, Virginia. After a regular day of work in May 1968, he was sharing a bottle of wine with friends when he toppled backwards off a low wall and hit his head. After being conveyed to hospital, he was pronounced dead and his heart and kidneys were removed without the consent or knowledge of his family. It fell to his brother, who was tipped off that there was something awry in the conduct of staff at the Virginia Medical College (VMC), to track down Bruce’s body and seek legal reparation.
Jones situates this episode against the role the state of Virginia played in the slave trade and in America’s history of racial division. English colonisers settled Richmond in the 1600s, decimating the indigenous Powhatan people in the process. As tobacco became a staple of the local economy, by 1835 Richmond was also home to the biggest slave market outside New Orleans. When plans for a new medical school were underway in 1837, using the bodies of slaves for medical research was an explicit goal of the school’s founder, Dr Augustus Warne. This period marked the height of grave robbing in both the US and the UK; the practice had become widespread as the study of anatomy became a routine part of medical education.
For over a hundred years, rumours persisted not only about VMC’s involvement in grave robbing, but in the kidnapping of black people for research purposes. As Jones articulates, “popular notions that rich or otherwise well-connected whites would never see their loved ones’ corpses whisked away in the dead of night” were reinforced by the class hierarchy that persisted after death as an extension to the structural violence – including sub-standard medical treatment – that poor people experienced in life. Historians have identified that nineteenth century burial practices were linked to class; the richer you were, the closer to the church your grave was. Conversely, people of colour were often not even buried within formal graveyards.
Such hierarchies continue today. Throughout the 1980s and 1990s, anthropologist and co-founder of Organs Watch Nancy Scheper-Hughes researched organ theft perpetrated against poor communities in South Africa and Brazil. By this time, organ transplantation was a widespread practice, and it had created a “market” for organs which, combined with ineffective regulation, allowed organ brokers to facilitate an international trade in dubiously procured body parts. She argued that the global organ trade characterises the bodies of the poor as though they are more valuable dead than alive, and warns that systemic inequality continues to define the supply of organs.
In 2011, the ringleader of an international “kidney matchmaker” was prosecuted in New Jersey, while in December 2015 Turkish authorities detained a man accused of recruiting Syrian refuges to sell kidneys in exchange for legal protection. Additionally last year a UK based non-governmental tribunal also accused the Chinese government of continuing to forcibly harvest organs from executed prisoners and persecuted minorities, such as Falun Gong.
While medical advancements are undoubtedly important for humanity, it is equally vital that dubious practices committed in the name of progress are not covered up by the cloak of altruism that can be easily invoked to shut down discussions of medical ethics. Initially, as with the HeLa cells, the circumstances surrounding the transplantation of Bruce Tucker’s heart fell between the cracks of history; Jones recounts that it was reported in the local paper with the headline “Heart Transplant Operation performed Here at MCV.” Jones also reports that in 2016, the MCV website continued to whitewash this episode, making no mention of the “donor”: “In 1968, our transplant team performed its first heart transplant procedure, distinguishing our program as the longest running program on the East coast and the second oldest in the United States.”
The silence continues to an extent today; an example of which can be found in the book Heart: A History by Sandeep Jauhar, an American heart surgeon who has a history of cardiovascular disease in his own family. This book was listed for the prestigious Wellcome Prize in the UK; while it discussed surgeons involved in the heart transplant race, it did not mention Bruce Tucker.
The Organ Thieves is a comprehensive and spine-chilling account of the racist and discriminatory history that has facilitated the medical practices taken for granted today. It is a critical remediation to popular understandings of the history of medical research.