As described by Rebecca Skloot in The Immortal Life of Henrietta Lacks, Lacks had a hard life even before developing that virulent cancer. Her family received no compensation and minimal recognition for her contribution to modern medicine. Under the new agreement, family members will be on a committee that considers requests for research and publication of genetic data using the HeLa cells, restoring the principle of people being in charge of their own tissue and biological information.
There’s an irony in this situation, of a sort I first noticed in another case of horrible medical care given to an African-American in Jim-Crow America. In 1947 San Francisco doctors diagnosed Elmer Allen, a Pullman porter, with bone cancer. Considering his leg (or simply Allen himself) untreatable, they injected that leg with plutonium in order to study how the radioactive element affected the human body. Three days after the injection, the doctors amputated that leg and sent him home to die.
Allen lived for forty-four more years. He died in 1991, one year before reporter Eileen Welsome connected him to the records of the plutonium experiment. He never knew how badly his doctors and government had treated him, but Allen was reportedly bitter all his life about having lost his leg and career. Yet that amputation, as heartless as it was, may in fact have saved him from the bone cancer.
Similarly, Henrietta Lacks’s descendants view her undying cells as a surviving part of her, yet if she had had the option of killing or getting rid of that cancer she would surely have been glad to take it, and to think of those cells as something apart from herself.