In 1951 a young woman named Henrietta Lacks died of an incredibly aggressive form of cervical cancer, just a few months after complaining to her friends about a ‘knot on her womb’. When the autopsy was performed, she looked as though she had been ‘filled with pearls’. These ‘pearls’ were cancerous tissue, derived from the original cervical tumour that had spread throughout her body. Henrietta had been treated in the ‘blacks only’ ward of the John Hopkins hospital in a poor region of Baltimore, at a time when racial segregation meant that she was considered lucky to be treated at all. She left a husband and five young children behind.
However, one part of her did not die – her cancer. In millions of Petri dishes in laboratories around the world today, cells from the tumour that killed her aged 31 live on and thrive. Forming a cell line named HeLa (a description derived from Henrietta’s name: for decades she was wrongly known as Helen Lane) these cells effectively founded the practice of modern cell culture. Today cell culture is an indispensable research technique. Cells can be grown ‘in vitro’ (literally, ‘on glass’), ‘fed’ by a culture medium that supplies them with nutrients. They can then be probed to uncover their mechanisms, manipulated to grow in different media, or used to test drugs. Unlike cells used in other failed culture attempts, HeLa cells just kept on growing and enabled many crucial discoveries, including development of a polio vaccine in the 1950s. Polio was a terrifying disease which infected over 45,000 people, paralysing hundreds of children. HeLa cells were instrumental in developing an effective vaccine.
The founding of the first human cell culture line was entirely due to chance – the scientists who grew Henrietta’s cells had tried and failed with multiple other patient samples, also acquired without true informed consent. At that time there was no legal obligation towards a patient with regard to obtaining informed consent before harvesting and using their tissues for research. Henrietta signed a form that said Hopkins could use her tissues, but would not have been told what this truly meant. There was no perceived ethical hurdle in using someone’s tissue for research (potentially even to garner profit) in this manner. Decades after Henrietta had died there was a comparable case (Moore v. Regents of the University of California) in which another patient’s cancer was removed and the tissue used to create a commercialised cell line. Unlike Henrietta, this patient (John Moore) lived, realised what had happened, and hired a lawyer. However eventually the Californian court ruled he had no right to any tissues he had ‘discarded’ by allowing the doctor to remove his spleen, so he received no share of the profit generated by use of his tissues.
The story of Henrietta Lacks highlights the appalling disregard at that time for the rights of black patients. Even more shocking examples of this can be found in ‘trials’ such as the Tuskegee syphilis experiment and the so-called Mississippi ‘appendectomies’ (forced sterilisations, primarily performed on black people). The Tuskegee experiments were conducted until the 1970s. These ‘trials’ involved white researchers observing black men infected with syphilis. The men were told they were being cured of ‘bad blood’ and were offered rewards such as free meals and showers for their participation in the so-called experiment. When they died, their families were offered the paltry compensation of a free funeral. The men received no treatment for their disease, not even when penicillin was found to be a cure. Instead, the scientists made notes as their condition deteriorated, making no effort to save their lives.
In Henrietta’s case, she apparently received standard treatment for the time, but nevertheless died in agonising pain, her skin scorched black from the radiation therapy. As she lay dying she was not allowed to see her children, but managed to crawl to the window to watch them play outside in the car park. When she died, her family mourned, entirely unaware that her cells were uncontrollably growing in vats of culture medium, about to change the course of medical science. When Henrietta’s cells proved so successful in culture, they were sent by standard airmail by George Gey, the man behind their development, to laboratories all over the world – there was no concern about the safety of transporting biological material, nor the cells’ survival, as there would be today!
George Gey shared HeLa cells in good faith and this enabled research that would not otherwise have been possible. However this unregulated distribution eventually enabled pharmaceutical companies to profit from HeLa cells. A single vial of HeLa can be sold for around two hundred dollars. As money was being made from the cells, Henrietta’s children and their families were still in Baltimore, unaware of the furore surrounding HeLa. Worse still, despite the fact that their mother’s tissue was revolutionising medicine, her family were unable to even afford health insurance or essential medicine. Her husband eventually lost a leg due to his uncontrolled diabetes – something that could have been prevented with proper medical care. Soon after becoming an established cell line, HeLa truly took over biomedical research: it has been estimated that if all the HeLa cells in the world were lined up, they would encircle the globe three times. Her cells tangibly impacted medical care – but not that of her own family.
It was not until 20 years after Henrietta’s death that her family found out that her cells were still alive. Their discovery caused shock and horror, particularly with science fiction headlines being bandied about. HeLa cells had been shot into space, used in atomic bomb tests and attacked by self-styled ‘faith healers’. Her family believed scientists could clone Henrietta, especially after reading science fiction stories about ‘The Immortal Woman’ and news reports about ‘human-animal’ hybrids created in the lab. Their terrible hurt and misunderstanding has been at least partially alleviated today, in particular by the work of the Lacks’ family foundation, which exists to raise awareness of Henrietta and her legacy, as well as facilitate medical care for her descendants.
Henrietta’s story is well worth reading more about. Bio Detectives recommends the book about Henrietta Lacks, her life, the ‘HeLa’ cell line and medical ethics, by Rebecca Skloot. You can buy the book from Amazon by following this link: The Immortal Life of Henrietta Lacks.