My teammates and I just finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot, a novel that centers around a woman whose cells were taken from her nonconsensually. Henrietta Lacks was a black woman living in 1950s Virginia, when she developed cervical cancer. At the same time, Dr. George Gey was seeking cells that would live forever, wanting to recreate a phenomenon discovered previously with certain chicken heart cells. Admitted to John Hopkins Hospital, Henrietta was given standard radium treatment for cancer and also had pieces of her cervical and cancer tissue removed without her knowledge. These tissue cells were sent to Dr. Gey, who was collecting thousands of cells from hundreds of different patients. Unlike the other hundreds of thousands of cells that died shortly after being removed from their patients, Henrietta’s cancer cells, or HeLa cells, continued dividing, days, weeks, and months after being removed from Henrietta’s body. Gey began distributing HeLa cells to research centers all over the world for free, but one problem remained. Henrietta’s family had no idea any of this was happening. Henrietta had passed away from cancer, which had spread through her entire inner system and blocked her body from passing urine, causing toxins to build up in her blood. Henrietta’s family didn’t find out about HeLa cells until said cells were already distributed across the globe. Every time they tried to find out more, they were met with a dead end. They never saw any compensation, and had very little access to financial or legal resources. HeLa is a globally known name, and yet her family lives with no health insurance.
As we discussed Henrietta’s story, we were told to research any information that might have come out about her and her family since the publication of Skloot’s book. I found an article by the Washington Post, and as I read more about how Henrietta’s family had progressed since the end of the book, I grew more and more disturbed.
Since the publication of the book, tensions in the Lacks family had come to a peak. Many family members were taking offers to give speeches about Henrietta for money while others were still (rightfully) upset about what had happened to their relative. In addition, accusations were made that certain family members who were benefitting were not truly family members at all. In the midst of an HBO adaptation of Skloot’s book, Lawrence, Henrietta’s oldest son, has been almost completely excluded from the approval and planning of the show. Lawrence has also said that Skloot’s portrayal of Henrietta and the Lacks family was not true to reality and simply painted them as stereotypes. Henrietta didn’t have any of the grace she had in real life, and seemed to be portrayed more and more as just a cell. The Lackses were shown as poor and uneducated, and simply gave in to generalizations.
Ron Lacks, Lawrence’s son, also harbors resentment towards all the money being made by the multibillion companies that have used HeLa cells to develop their products and the cousins that collect money to give speeches about Henrietta. Ron and Lawrence feel that the others have sold themselves and their family history out to Skloot and HBO by signing contracts that would grant them money to help develop the television show, but would also sign away their rights to free speech about Henrietta.
There are many sides to every story, but it feels strange now to sit here and write a blog post about a book when I know that there is so much that was hidden. HeLa cells have helped change the world, but any representation of her should be approved by those who knew her best. The widespread use of HeLa cells today simply goes to show the complications behind many bioethical debates.