This week’s story is a little different. Henrietta Lacks didn’t have an extraordinary life, or any notable achievements. But her cells have been used to develop chemotherapy drugs, vaccines and in-vitro fertilisation, as well as being part of the human genome project. And she didn’t even give her permission for them to be used.
Henrietta Lacks was born in Virginia in 1920. After her mother died in 1924, Henrietta’s father couldn’t cope with his ten children and sent Henrietta to live with her grandfather in a log cabin that had been the slave quarters of a white ancestor’s tobacco plantation. She shared a room with her first cousin, David “Day” Lacks. At the age of 14, Henrietta gave birth to Day’s son, Lawrence. The cousins had a daughter, Elsie, in 1939, and married in 1941. At this point, Day got a job at a steel mill and moved to Maryland. There, they had three more children: David Jr., Deborah and Joseph, and reluctantly placed their daughter Elsie, who was developmentally disabled, in the Hospital for the Negro Insane.
In 1951, Henrietta went into a charity hospital that treated black patients, complaining of ‘a knot in my womb’ and was told that she had inoperable cervical cancer. In fact her cancer was so invasive that tumours had covered her kidneys, bladder, ovaries and uterus, as well as peppering every organ in her body. She died at the age of 31, and was buried in an unmarked grave.
But this story has a twist: Henrietta’s cells lived on after she died. Dr. George Otto Gey noticed that the aggressive nature of her cancer had allowed her cells to grow and reproduce exceptionally quickly in culture. Most human cells survived only a few days, but Henrietta’s cells were able to proliferate indefinitely. Without asking the family’s permission – it wasn’t required at the time – Gey created a cell line, HeLa. This opened up the opportunity for experiments that had previously not been possible on ethical grounds – these cells could be exposed to toxins, radiations and drugs. Today there are millions Henrietta’s cells in medical laboratories around the world.
For Henrietta’s children, the legacy of their mother’s cells was a difficult one. They didn’t know the cell line existed until Lawrence’s wife found out in a chance conversation with a cancer researcher. In 1973, a scientist contacted the family after the HeLa cell lines became contaminated, and took cell samples from family members. But the scientists didn’t explain to the family why they were testing them – Deborah was convinced she was being tested for the cancer that killed her mother. And while Henrietta’s cells were making pharmaceutical companies rich, her children were all in poor health and couldn’t even afford medical insurance.
But the world became aware of the injustice that had been done, thanks to a 1998 BBC documentary and Rebecca Skloot’s 2010 book: The Immortal Life of Henrietta Lacks. Henrietta’s grandchildren are the first generation of the family to receive a college education, and spend time educating others on the impact of how human cells are used in research. Two family representatives serve on a committee reviewing controlled access to the HeLa genome data. The family will never see a cent of the profits generated by the HeLa cell line, but they’ve been honored at the Smithsonian Institution and the National Foundation for Cancer Research. Morgan State University granted Henrietta an honorary degree. And her grave now bears a headstone, which reads: “Her immortal cells will continue to help mankind forever.”