Negroes & Lab Rats: The 'Ethics' of Unethical Scientific Research
Modern science. A marvel. Revolutionary medical advances emerged from centuries of research, that have helped doctors and scientists cure diseases and improve our quality of life. As we praise and celebrate these innovations - each century, marked by the invention of new procedures, new medication, new tools and Nobel prizes - we ignore that at the bedrock of many of these advances, lays a murky history, a history where inhumanity tears the Hippocratic Oath at its seams.
In January, a group of scientists from the Wuhan Institution of Virology announced that they had discovered how COVID-19 enters human cells, which is a crucial step towards finding a way to cure the disease. The scientists were able to identify the exact cell receptor the virus uses to enter human cells by conducting virus infectivity studies on HeLa cells – the cells taken from a black woman, in 1951, without her permission or her family’s knowledge.
Henrietta Lacks, a black woman, a wife, a mother of five, born on a tobacco farm, died tragically at just 31. But to science her body was simply the vessel that harboured the cancer cells that never stopped growing. For years, doctors at John Hopkins had been trying and failing to start a continuously reproducing cell line to provide an unlimited and cost-effective supply of material for studies and experiments whilst bypassing ethical concerns associated with the use of animal and human tissue. For reasons that are still unclear, the tissues taken without Henrietta Lacks’ consent during her cancer treatment did not only survive but grew at an exponential rate.
For decades, Henrietta Lacks, the woman whose cells were behind countless scientific breakthroughs including, the polio vaccine, advancements in chemotherapy, cell culture and cloning technology, gene mapping, the HPV vaccine and IVF, was forgotten. She revolutionized science yet lived in a time where African Americans had no choice but to be segregated into their coloured medical wards.
We all, in one way or another, have benefited from the immortal life of Henrietta Lacks. However, as cell banks and biotech companies, continue to profit off of the sale of her cells (~$260/£174 a tube), her relatives were left asking: “If our mother is so important to science, why can’t we get health insurance?”, her son Lawrence Lacks asks.
The Immortal Life of Henrietta Lacks by scientific journalist, Rebecca Skloot
2017 HBO Movie, starring Oprah
Modern medicine is propped up by a frame of black bodies.
The barbarisms that have taken place over centuries, are a direct result of the successful commodification and medicalisation of black bodies. In fact, black bodies as instruments of science, is a concept and custom, that is deeply rooted in the slave trade.
Physicians took advantage of the high death rate on the trans-Atlantic voyage. As stated in Mother Jones, to them, the ships to the ‘New World’ were more than floating tombs, “they were floating laboratories, offering researchers a chance to examine the course of diseases in fairly controlled, quarantined environments, classifying symptoms into diseases and hypothesising about their causes”. Additionally, black cadavers were transported and sold in medical schools and they were a source of financial gain. These bodies were given what historian Daina Ramey Berry calls ‘ghost value’, which was determined by their master’s income and capital and when they were intended to be sold to doctors for dissection.
The racism that underscored the slave trade was founded on the construct of race. A construct which was used to posit that the absence of melanin was the measure for excellence and superiority. This was the belief that shaped the lens through which many racialised, incorrect medical assumptions and hypotheses were made, such as the idea that black people could not feel pain.
This is Renty, one of the 13 slaves 19th-century Harvard biologist, Louis Agassiz
Slaves were merely clinical material.
Modern gynaecology and reproductive medicine were birthed from the exploitation, suffering and death of enslaved black women. The medical field at the time was extremely experimental in nature, especially gynaecological medicine, which subjected the enslaved to numerous experimental operations without anesthesia.
The experiences of black women at the hands of doctors and plantation owners should be considered in relation to their desire to ensure the longevity of the slave infrastructure. A black woman’s fertility was the key to this, so what was happening between her legs was now a matter of economic importance. In her book, Medical Bondage: Race, Gender and the Origins of American Gynaecology, historian Deirdre Cooper Owens explains how “medical doctors were included in the evaluation process and began to examine black women in southern slave markets…as gynaecology developed and American medicine was formalised, enslaved women’s examinations became part and parcel of doctors’ medical work as they assessed black women’s economic value”.
In addition, whilst examining Southern medical journals, she also found that the sexual exploitation suffered by the enslaved worked in tandem with physicians’ medical explorations and publications on medicalised sexual assaults and their physical effects on women. Doctors created medical journals, teaching hospitals, and colleges where the physical symptoms of these assaults were medicalised. “The publication of slave women’s rapes in medical writings allowed doctors to learn how to respond to the physical symptoms of sexual assault, such as pregnancy, infertility, venereal disease, and damaged reproductive organs”.
Cooper Owens also recounts how experimentation on black women by the ‘Father of Gynaecology’, Alabama doctor, James Marion Sims, led to the invention of tools and techniques still used today, such as the vaginal speculum – the metal or plastic tool doctors use during a pelvic exam, pap smearand insertion of contraception such as the IUD.
A metal Speculum
There has been a lot of debate, in recent years, around women putting off going to get their pap smears because of the fear surrounding the insertion of the speculum
In what is perhaps the most infamous case of medical malpractice - The ‘Tuskegee Study of Untreated Syphilis in the Negro Male’ - US Department of Health researchers, at the Tuskegee Institute spent 40 years withholding treatment from 400 black men with syphilis.
Their objective was to confirm the long-held view that syphilis acted differently in black and white people. In her book,Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-First Century, Dorothy Roberts stated scientists “believed that syphilis caused the greatest damage to the neurological system in whites but ravaged the cardiovascular system in blacks bypassing their ‘underdeveloped’brains”.
So, in 1932 researchers preyed on men of the ‘notoriously syphilis-soaked race’, under the false pretence of free healthcare, telling them that they were being tested for ‘bad blood’. Instead, they withheld treatment, recorded the progression of their symptoms and watched the men die.
The 1997 film based on the Tuskegee Experiment
The Tuskegee Study puts a spotlight on the hypocrisy that exists in the American psyche. The American scientific community condemned the scientific racism by the Nazis and supported the Nuremberg Code (the guiding principles for ethical human experimentation) on the one hand yet continued to systematically and willing watch as the black men died slow and preventable deaths on their watch for 40 years, even after it became known that penicillin could cure syphilis in 1947. Allowing the men to die was seen by the white American scientists as a ‘necessary’ component of the study. Its sole purpose was to allow researchers to autopsy their dead bodies to examine the full effects of syphilis.
Black bodies, forever study subjects for the white gaze.
Billl Clinton and Herman Shaw, one of the survivors of the Tuskegee Experiment, during the 1997 Presidential Apology
However, the only hypothesis this study confirmed is the inhumanity that arises from the belief in intrinsic racial differences and the resulting blind spot to ethical issues that exists in biomedical research. Etched into the collective memory of the African American community, the study’s legacy is one of mistrust of the medical establishment. In 2007, Kennedy et al.conducted a survey which revealed that African Americans are more likely to not trust that their doctors would fully explain the significance of their participation in clinical research and other studies, which is usurping given it’s black people whose bodies have been exploited by the system for centuries.
“The future of the negro lies more in the research laboratory than in the schools”
- Dr. Thomas W. Murrell (US Public Health Service physician)
In 1969, John Hopkins researchers used blood samples from more than 7,000 black children to look for the genetic predisposition to criminal behaviour, without parental consent and on the basis that black people’s genetic composition made them inherently more violent than their white counterparts.
Similarly, in her book, ‘The African World in Dialogue: An Appeal to Action!’, Teresa N. Washington reveals that in the 1950s in New Orleans, psychiatrists Robert Heath and Harry Baily used black prisoners to conduct psychosurgery experiments which involved electrodes being implanted into the brain. When discussing their experiment in a lecture to nurses 20 years later they had used ‘blacks’ because “it was cheaper to use niggers than cats because they were cheap experimental animals”.
“[It was] cheaper to use niggers than cats because they were everywhere and cheap experimental animals”
Controversies surrounding human experimentation are not a thing of the distant past. In 2011, the first paymentswere made to parents of four children, after a 15-year legal battle againstPfizerover their fiercely controversial drug trial. In 1996, Pfizer sent a team to Kano, in northern Nigeria, during a meningitis epidemic to test the efficacy of their new antibiotic, Trovan. In their trial on 200 children, half were given Trovan and the other half were given the ‘gold standard’ treatment for meningitis. Eleven children died as a result of the trial, five of whom had been given Trovan, while others suffered from blindness, deafness and brain damage. An investigation by the Washington Post,revealed that the trial’s certificate of approval from a hospital ethics board was forgedand that Nigerian patients had not been warned that animals studies had shown that the drugs similar to Trovan may cause joint damage, whereas US patients were warned in a subsequent trial. Although Pfizer claims the deaths were a result of meningitis, their drug was withdrawn in Europe, after it was introduced in 1998, because it reportedly caused liver damage.
Serena Williams and Beyonce have both experienced and brought attention to the risks of childbirth for black women
The image of the black body propagated by medicine over centuries continues to interfere with the care black people receive today. Harriet A. Washington discussed how “slave narratives and planters' records[revealed] that an owner faced with a sick slave was likely to believe the illness was feigned”. This culture of dismissing patient complaints, particularly black women’s, is why black women have a higher maternal death rate than their Caucasian counterparts in both the US and the UK. African American women die of pregnancy-related causes at three times the rateof white women, even after accounting for income, education, and access to other resources and in the UK black women are five timesmore likely to die in pregnancy than white women.
“Black women are undervalued. They are not monitored as carefully as white women are. When they do present with symptoms, they are often dismissed"
- Dr. Ana Langer, Director of the Women and Health Initiative at the Harvard
Modern science. A marvel. The repeated mutilation of black bodies.
Society has consistently failed to acknowledge the brutalities and the injustices that were carried out against black people, presenting a warped version of history. By ignoring its murky foundations, we fail to appreciate the contributions and forced sacrifices black people have made for science. We are then also unable to truly understand the depth of the irony that is associated with the large number of black people that have difficulties accessing basic healthcare.
Life expectancy may have risen, vaccines may have been created and diseases may have been eradicated, but until the medical and scientific community takes practical steps towards the demedicalisation, decommodification and humanisation of black bodies, inequity in care, treatment and how experiments are administered will prevail.
I would like to give thanks to Nigerian medical scientist, Adedayo Shonekan, for helping me grapple with some of the complex scientific research and terms that went into the creation of this article.