Henrietta Lacks (HeLa), the Black woman whose cancer cells were the first to be essentially "immortalised" for testing that helped us understand and treat cancer better. Kadir Nelson, www.kadirnelson.com

Content note: discussion of race and racism.

In the conversations about decolonising education, STEM subjects are often overlooked, perhaps because people consider them to be based on facts rather than perspectives. But when lecturers still often celebrate Watson and Crick for discovering the structure of DNA – with no mention of Watson’s racist views and support of eugenics – it is clear that decolonisation of the sciences is important. Decolonisation is more than just becoming aware of the contributions of minority ethnic scientists, who have been forgotten and looked over when handing out Nobel Prizes and other awards. It is also acknowledging the history of science, which has exploited the bodies of ethnic minorities, particularly Black people, for use in research for “the progression of scientific knowledge”.

Henrietta Lacks

One of the best-known examples of Black people being exploited in science is Henrietta Lacks. A Black woman being treated for cervical cancer, doctors found that the cancerous cells taken from her behaved abnormally: they cycled at a high rate and had a long life-span, so were known as “immortal”. Until then, Dr George Otto Gey, the first researcher to study Lacks’ cells, had struggled with research into cancer cells because they had such a short lifespan, so very little testing could be done. The sample taken from Lacks before her death in 1951 was used to produce many more cancer cells, and this line of cells was named HeLa, after the first two letters of each of her names. These cells were taken without consent, as was considered to be standard practice at the time, and Lack’s family did not find out about their continued use in research until many years later, in 1975, when other members of the scientific community contacted her family requesting blood samples and other materials to continue their research with. In fact, the HeLa cell line is still used for scientific research today, with over 60,000 scientific articles published based on research using HeLa cells. The story of Henrietta Lacks raises important questions of informed consent and ethics within science: HeLa cells have been influential in creating the polio vaccine and developing anti-cancer drugs such as tamoxifen, but their commercial use meant her cells were sold across the world by pharmaceutical companies for thousands of pounds whilst the Lacks family could not afford healthcare.

“Two French doctors speaking on live television suggested testing COVID-19 vaccines in Africa.”

James Marion Sims

James Marion Sims is considered to be the “father of gynaecology” for the contributions of his research to understanding the anatomy of the vagina and developing techniques that became the basis of modern vaginal surgery. His research in treating vesicovaginal fistula between 1845 and 1849 was based on experimental surgeries on Black slave women without anaesthesia; once successful methods were developed, he then treated white women with the condition. Although under modern-day ethics these actions are unacceptable, some people, such as L. Lewis Wall, continue to defend his methods because they conformed to standard medical practices at the time and have improved the quality of life of many women since then. Until April 2018, a statue of him stood in New York, removed only after people learned the true circumstances of his work and campaigned for its removal. Several medical terms and tools, such as the Sims’ position and Sims’ speculum, are still named after him. It seems that Sims is still celebrated, whilst the names and lives of most of the slave women he experimented on are lost to history.

The Tuskegee Syphilis Experiment

The Tuskegee Syphilis Experiment aimed to study the progression of untreated syphilis and determine whether there were racial differences in symptoms and outcomes of the disease. Between 1932 and 1972, nearly 400 Black men with syphilis thought they were receiving medical treatment, but in fact were only given a placebo. The trial continued even when penicillin, a successful treatment for syphilis, was developed and became widely available in 1947, and when the Public Health Service published updated guidelines on the use of human subjects in experiments in 1966. The catastrophic effects of this experiment included 128 of the men in the experiment dying due to syphilis or related complications, syphilis being spread to others, and 19 of their children being born with congenital syphilis. In 1972, the trial came to end when information about it was leaked to the press. This trial violated many ethical standards and damaged the trust of Black communities towards public health efforts and medical trials; a study suggests that the distrust has led to Black people, especially those from poorer economic backgrounds, being less likely to seek preventative healthcare, promoting racial inequalities in life expectancy.


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COVID-19 and the future

Despite laws on ethics in research being put into place, the mentalities that drove this research still pervade today. An example of this is when two French doctors speaking on live television suggested testing COVID-19 vaccines in Africa, “where [there] are no masks, no treatment, no intensive care services”, although at the time African countries had very few cases compared to European countries. There would be no benefit in testing COVID-19 vaccines or drugs on people who are not suffering from it, so this statement was interpreted by viewers as having racial biases fuelling it. Professor Malegapuru Makgoba, an immunologist and South African National Health Ombudsman, said: “It would be unethical to conduct a clinical trial where there is no disease or there is nothing to test for … You [should] only conduct clinical trials when you have a disease, and its prevalence is enough for it to achieve scientific validity.”

In response to the words of the French doctors, Tedros Adhanom Ghebreyesus, the Director-General of the World Health Organisation said, “the hangover from a colonial mentality has to stop”. With criticism of a “colonial mentality” continuing to pervade in education, it is clear that celebrating the achievements of some scientists from minority ethnic backgrounds is not enough to call science decolonised. Instead, it is the responsibility of educational and research institutions to ensure that scientists and academics are aware of the exploitative history of science, and can learn from this knowledge to ensure that biases or breaches of ethics – that have consistently disadvantaged Black people – are not allowed to continue in scientific research in the future.

If you have been affected by any of the issues raised in this article, the following information and support is available: