In 1951, a thirty-year-old black wife and mother was being treated for cervical cancer at Johns Hopkins Hospital in Baltimore. Unbeknownst to her, the doctor took some of her healthy and cancerous cells for research purposes. This was routinely done before informed consent was common practice.
Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge. Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment (pp. 29-30).
Researchers were trying to grow cells in culture from their samples, but the samples all died. However, Henrietta’s cancerous cells continued to divide over and over under the right conditions. Eventually the cells were used to test Jonas Salk’s polio vaccine on a large scale. They were involved in cancer and AIDS research, experiments in space, cloning, genetic mapping, and much more. The cell line became known as HeLa, using the first two letters of Henrietta’s first and last names.
Henrietta died at age 31 after a horrific battle with cancer. Her family knew nothing about her cells being used in research nor about whole factories being built to house and reproduce her cells. Twenty years later, the HeLa cells were so strong that they easily contaminated other cell cultures. The family began getting calls from researchers who wanted samples of their blood in order to determine the genetic markers of HeLa. Naturally, Henrietta’s family members were confused, not understanding how some part of their mother was alive. When they learned there was a whole industry that sprang up around their mother’s cells, they wondered why they weren’t getting any of the benefits. Many of them could not even afford health insurance.
Rebecca Skloot first heard Henrietta’s name in a college class, but not much more was said about her. Rebecca wondered about the woman behind the HeLa cells. Ten years of research resulted in The Immortal Life of Henrietta Lacks.
There are several threads to the book. Part of it in Henrietta’s story: what’s known of her background, personality, family. Another thread is the development of the cell line, the scientists involved, the industry that sprang up. Yet another involves the ethics and arguments swirling about research, consent, and compensation. Another tells the story of Henrietta’s children and what became of them. And the final thread is the author’s journey to research the cells and to talk to the family who were, understandably, skittish about reporters by that time. Eventually, Rebecca became very close to Henrietta’s daughter, Deborah.
One of the most touching scenes in the book was when a scientist invited Henrietta’s two youngest children to a lab to see their mother’s cells. Deborah looked in wonder through the microscope and on the screen where the scientists enlarged the cells. She got to hold vial of her mother’s cells and witness one of the cells on screen dividing.
In the history of cell culture development and cancer research, it was astonishing to read how some researchers would get caught up in the science and forget the human factor. One injected Henrietta’s cancerous cells into other patients without telling them to see if they “caught” cancer that way and to test how healthy and cancer patients fought off the cells differently. Guidelines had been set up after the Nazi experimentation during WWII, but the guidelines weren’t law then.
One patient caught on that something unusual was going on when his doctor kept calling him back for blood work even after the patient had moved away. He learned that his blood produced a unique protein, and the doctor was experimenting and hoping to patent a cell line. Unlike Henrietta, this man had the means to sue the doctor. The case went through several courts and appeals, but the patient finally lost. It was deemed that once your tissue leaves your body, it’s not yours any more. In an afterword, Rebecca said that there are storehouses for tissues and organs removed from patients. Most, I think, would not object to their cells and removed organs being used in study. But when money is being made off their parts, they naturally feel entitled to a portion of the proceeds. Rebecca’s afterword details the latest (at the time the book went to press in 2009) complicated considerations of the different sides of cell research, ownership, and profitability.
Objectionable elements: unfortunately, there are 4 instances of the “f” word and one graphic scene when Deborah, was being pursued by a cousin.
I had first heard of this book several years ago, but figured it would be too “science-y,” too much like a documentary. Then it came up on an audiobook sale, nicely read by Cassandra Campbell and Bahni Turpin. I’m glad I finally read it. I’m glad Henrietta’s story was finally brought to light, and the medical and ethical discussions were detailed clearly.