I’ll start with the bottom line: The Immortal Life of Henrietta Lacks is one of the best non-fiction books I’ve read in years. Author Rebecca Skloot not only explains the science in a compelling, accessible manner, she also explores the ethics of the medical research and devotes at least half the book to the people that were touched by Henrietta Lacks and her legacy. Five enthusiastic stars!
It’s hard to say where this story “begins,” because it really depends on whether you are talking about the science or the human element. From a medical research perspective, I suppose it starts with George Gey, head of tissue sample research at Johns Hopkins. Gey had spent decades trying to grow malignant cancer cells outside the body for the purpose of studying cancer and finding a cure. He and his wife, Margaret, “were determined to grow the first immortal human cells: a continuously dividing line of cells all descended from one original sample, cells that would constantly replenish themselves and never die.” As such, he would take any cancer cells he could get his hands on. Fellow scientists studying a different line of cancer research provided Gey with cervical cancer tissue in a mutually beneficial research arrangement. Of those cancerous cells, the ones that came from a patient named Henrietta Lacks were the ones that flourished.
I should mention that this happened in 1951, long before HIPAA or “informed consent” or any number of other patient rights initiatives in the United States. Researchers routinely took cells from patients without their knowledge and shared them freely among their community for the benefit of scientific pursuit–most notably, finding cures for disease. What’s remarkable about the case of Henrietta Lacks is that her cells (code named HeLa) thrived so well that they became used in countless scientific studies. Jonas Salk used them to develop a polio vaccine; they were used for cancer and AIDS research; they remain, to this day, a cornerstone of medical study. Billions (if not trillions at this point) of HeLA cells are sitting in labs all over the world.
From a human perspective, the story began when 31-year-old Henrietta Lacks quietly and stoically sought medical treatment for a “knot” in her uterus. When a doctor at Johns Hopkins told her that her biopsy showed a malignant cancer, she went back to the hospital for treatment, not even bothering to tell her family she had cancer. (How much Henrietta understood about her condition is questionable. As this book demonstrates, doctors of that era were not known for attending to the human-side of their role, including ensuring that patients understood their condition or treatment.) During that visit to Johns Hopkins, her cells were collected and sent on to Gey for research. Henrietta’s condition was dire, the cancer having metastasized throughout her body. In spite of treatment, she died in August 1951.
What’s truly remarkable, and shocking, is that for decades after Henrietta died, her family had no idea how important or prolific her cells were.
In 1999, when Skloot first began research for a book about Lacks, gatekeepers for the family were understandably guarded. In addition to having been kept in the dark about HeLa for decades, black communities have a fraught history with medical research, from the Tuskegee Syphilis Study to Mississippi Appendectomies (something I wasn’t aware of before reading this book). In 1973, when the family suddenly (and very accidentally) found out that Henrietta’s cells were alive and part of scientific research, the reaction was panic, horror, and confusion. “If they’re doing research on Henrietta,” one family member thought, “it’s only a matter of time before they come for Henrietta’s children, and maybe her grandchildren.” And, “How come nobody told her family part of her was still alive?”
On top of that, by the time Skloot came calling, the family had become familiar with conmen looking to exploit them, including one alleged distant relative who called himself Sir Lord Kennan Kester Cofield, later adding “Dr.” to his title. In a story that would be funny if the family hadn’t already been through so much, Cofield approached them and claimed to be a lawyer who would help them sue Johns Hopkins. Fortunately, Hopkins attorney Richard Kidwell quickly exposed Cofield as a flim-flam man and convinced Henreitta’s daughter Deborah to bar him from accessing Henrietta’s medical records. What exactly Cofield’s end-game was isn’t clear, but then this was a guy who threatened to sue multiple restaurants for food poisoning during a period where he was in prison and unable to eat out at restaurants.
Skloot spent years earning the family’s trust and eventually became close to Deborah Lacks. While writing the book, she went at the family’s pace, explained everything she learned about HeLa cells in clear terms (something no medical person had previously done), and kept a promise to Deborah to not hide anything she discovered. This is a remarkable book in that it doesn’t just tell the story of the immortal HeLa cells; it tells the story of Henrietta and her family, including the good, the bad, and the ugly.
The injustice of the story is that, while medical researchers had the best of intentions in harvesting and growing the HeLa cells, the fact remains that the Lacks family never realized any financial benefit. As Deborah asked, “If our mother cells done so much for medicine, how come her family can’t afford to see no doctors?” A fair question. Taking cells from Henrietta without her consent would be illegal under today’s laws, and possibly even under the laws of the time, but the statute of limitations has long since passed on this case. (Incidentally, waste from medical procedures–blood, tissue, and fluids removed during surgery–are another matter. It is legal for researchers to use these materials without patient consent.)
I’d hate to end this story with a weak, “But her legacy lives on,” though, in fact, it does. However, I’m happy to report that in 2010 Skloot established the Henrietta Lacks Foundation to help “individuals who have made important contributions to scientific research without personally benefiting from those contributions, particularly those used in research without their knowledge or consent.” The foundation provides grants to descendants of test subjects of the Tuskegee Syphilis Studies, Human Radiation Experiments, and others, as well as to Henrietta’s own descendants.
