Henrietta Lacks and the history of health racism

Words: Edd Jones

Cells are the building blocks of life. Each living thing on Earth is made of cells, and the human cell has been at the centre of all medical research. But although every scientist remembers receiving their first flask of cells, there’s little acknowledgement that those tiny organisms we work with were once part of another human being.

Through the four years of my biology degree, the only time we learned about the origin of the cells used in our research was in a lecture on cancer. A single slide read: ‘HeLa cells came from Henrietta Lacks.’

Henrietta Lacks was an African-American tobacco farmer who died from cervical cancer in 1951, aged 31. She was treated at Johns Hopkins Hospital in Maryland, one of the only hospitals at the time that treated Black patients from poor communities. 

During the treatment, doctors took two cell samples, which were sent to the hospital’s research labs. One researcher, George Gey, discovered that Henrietta’s cells thrived outside the body and in the lab, probably explaining the aggressive nature of the disease that had killed her. Gey developed these cells into a line nicknamed HeLa cells, which have been used in biomedical research around the world for decades. 

For the first time, scientists had living cells that could survive outside the body. They could watch cells divide and see how particular viruses behaved. They could also conduct experiments that would have been unethical or harmful to conduct on a human body: for example, to see how certain molecules cause cancer. 

Henrietta’s cells have been responsible for some of the most important medical advances in human history. Without her, we wouldn’t have the polio vaccine, chemotherapy or IVF – her cells even travelled into space on a Soviet satellite, to see how they would act in zero gravity. We owe these discoveries to her.

In the face of such advances, it can be hard to give voice to the difficult ethical questions that Henrietta’s story raises. But neither she nor her family gave the doctors permission to harvest her cells, and for years, her family were left in the dark about the contribution she had made.

HeLa cells were so good at surviving outside the body that they had started to contaminate other samples and appear in experiments they weren’t meant to. Scientists asked the Lacks family for blood samples, so that they could more easily identify them. The Lacks were never told why they were repeatedly asked to give blood: they only discovered the importance of Henrietta’s cells in medical research through a chance conversation in 1973, 22 years after her death.

Systemic racism is central to understanding Henrietta Lacks story. Journalists and scholars are no strangers to cases of white doctors conducting unethical and often horrific experiments on Black people. Henrietta wasn’t singled out because of her skin colour, but the social circumstances that led to her samples being taken make it very hard to imagine this happening to a white person. 

In the late 40s and early 50s, it was standard practice for doctors to take cervical cancer tissues from any women who sought treatment at John Hopkins. America was racially segregated: the reason Henrietta was being treated at Hopkins in the first place was her skin colour. No other hospital would treat her. John Hopkins was also a charity hospital – Henrietta and her family had little money.

It’s well-evidenced how segregation affected healthcare delivery. Even now, there are huge racial differences in healthcare outcomes, causing discrepancies in infant mortality to life expectancy. In 2020, the COVID-19 pandemic has highlighted this problem. Black individuals are five times more likely to be hospitalised with COVID-19 in the US, and the CDC has linked this to ‘longstanding systemic health and social inequities’ among ethnic minority groups.

Worse, the medical treatments that have been developed using Henrietta’s cells are only available to those who can afford medical insurance in the US. Families like the Lacks were exactly the sort of demographic who couldn’t access them. This isn’t a past problem: in the US, African American people are twice as likely to lose their insurance in one year, and 8% more likely to live without insurance, when compared to white Americans. 

In 2018, Johns Hopkins University announced plans to name a research building after Henrietta. We should honour her legacy – but it seems more important (and less likely) that these predominantly white institutions dedicate themselves to acknowledging and dismantling the racist systems that have made these legacies so contentious. Henrietta’s story is not an example of historical ethical failures. It’s a case study that highlights the systems still killing Black people today. 

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Edd Jones has been working in science communications in the charity sector since 2015, after completing his MSc in Molecular Medicine. Follow him on Twitter.

Artwork by Emily Greene.