I’m currently reading The Emperor of All Maladies. It’s a great book on the history of cancer and cancer treatments. Reading it is like sitting in the observation desk of a surgical theater while a new and especially tricky procedure is being conducted. You are witnessing one of the scariest moments of someone’s life and the most triumphant moment in another’s. Yet your attention is not on the sedated person, the one who will pay with their life should things not go as planned. Your attention is on the person in the scrubs, with the knife.
Each chapter of The Emperor of All Maladies, introduces a new doctor or researcher who played an integral role in defining various cancers or in uncovering a treatment. But very rarely do we spend any time on the patients. Sure, famous cancer patients, like Susan Sontag are mentioned, but there are whole chapters that sail by without a single mention of a patient. This is especially striking during the chapter on breast cancer clinical trials.
I understand why this is the way the story is told. In medicine, especially in oncology, the casualties vastly out number the successes. We laud the doctors and we try to forget about the millions of patients who took the ultimate leap, not just to save their own lives, but to try to give doctors the knowledge they would need to save the patients who would come later.
However, there is one patient we should all should remember. Not because she purchased a spot in our consciousness, not because she was a gifted writer, but because her memory stands at the center of the war between racism, medicine, ethics, class, greed and a miracle. She had a routine examination that, unbeknownst to her, crossed the line into an unauthorized invasion of her person, which yielded extraordinary results.
Henrietta Lacks (1920-1951) was born Loretta Pleasant in Virginia. Her mother died when she was four and her father, overwhelmed by the idea of caring for ten children by himself, broke up the family and sent the children to live with several different relatives.
Lacks moved in with her grandfather and married her first cousin, David Lacks, when she was twenty-one. They had five children together. Eventually, they left the tobacco farms of Virginia and moved to Baltimore County so that David could find work in the steel mills.
About four months after the birth of her fifth child, Lacks was diagnosed with Stage 1 cervical cancer. She was sent to Johns Hopkins for treatment because that was the only hospital in the area that would treat black patients. They treated her with radiation, sewing radium tubes around the tumor.
It was during the surgery to implant the radium tubes that doctors removed both healthy and cancerous tissue samples from Lacks’ body without her permission. The tissue was given to Dr. Otto Gey who, shortly thereafter, discovered something remarkable about the cancerous tissue; the cells didn’t die. Typically, human cells die within a few days, but Lacks’ cells didn’t die. Gey was able to isolate them, and from those cells grow a cell line for use in experiments.
Gey named the cell line HeLa which went on to be used in some of the most important medical developments of the twentieth century. Lacks’ cells were central to the much lauded Jonas Salk’s work in developing the polio vaccine. They have also been used in cancer and AIDS researched and to test products. To date over 20 tons of the HeLa cells have been reproduced for scientific research.
Lacks eventually died from kidney failure at the age of 31. She checked into Johns Hopkins in a considerable amount of distress on August 8th and remained there until her death on October 5th. She was buried in the family cemetery without a tombstone.
In the 1970’s, members of Lacks’ family were contacted by researchers who wanted to further study the family’s genetics. Twenty years after her death, and after her cells had been at the center of one of the biggest medical breakthroughs of the twentieth century, the Lacks family learned of the unauthorized removal of Henrietta’s tissue and the vast array of scientific research her cells had been used in. They obviously had not received any financial compensation, despite the fact that her cells had been used to test a variety of lucrative adhesives and cosmetics.
Henrietta Lacks’ contribution to science has been commemorated by Morehouse School of Medicine and Morgan State University awarded her a posthumous honorary degree.
The legacy of Lacks is a remarkable one. She happened to posses a unique set of cells that were useful to the biomedical world. But as we remember Lacks, we should also remember the other black women, before and after Lacks whose bodies were invaded and violated by doctors, without their consent, often leaving them irreversibly damaged.
For more on Henrietta Lacks read, The Immortal Life of Henrietta Lacks
