Her name was Henrietta Lacks. In 1951, the poor mother of five suffered from what she called “a painful knot on my womb”. She sought treatment at Johns Hopkins, the only charity hospital around that treated black patients. The diagnosis: cervical cancer. Before her death, her doctor cut out two dime-sized tissue samples from Lack’s cervix without her knowledge or consent. The lab assistant used an abbreviation of Lacks name, HeLa on her test tubes. Although she died soon after, her cells lived on. Researcher George Gey soon realized that her cells (unlike any of the other samples he had studied) continuously reproduced and he began distributing her cells to other scientists and labs. The cells from her tumor would spawn a multi-billion dollar industry and became a foundation of modern science, leading to breakthroughs in the polio vaccine, cloning, fertility, cancer treatment, benefiting virtually anyone who has taken medicine stronger than an aspirin. Scientists have grown some 20 tons of her cells. HeLa led to the understanding that normal human cells have 46 chromosomes. NASA launched HeLa into orbit to test how human cells behave in zero-gravity. She has been all over the world.
In “The Immortal Life of Henrietta Lacks” Rebecca Skoot introduces us to the real life woman who provided the cells, and her children. Her kids and grand kids still live in Virginia where their mother died and are still entrenched in the same debilitating poverty, while the HeLa cells have made men rich around the world. The book leaps back and forth from Henrietta’s life, to the scientific breakthroughs her cells provided, to the dark truth that Henrietta’s children cannot afford the health insurance to treat diseases that their own mother helped cure. As Lack’s daughter Deborah says, “If our mother’s cells done so much for medicine, how come her family can’t afford to see no doctors?”
The story of Henrietta Lacks and her precious HeLa cells is complicated by the interplay of race, poverty, ethics and science. As modern science progresses meteorically, the laws and ethical implications are slow to catch up. Now, scientists have to get consent from patients in order to use a sample from them for scientific research (a law that many scientists hate). During Henrietta’s time, a doctor wouldn’t think to inform an illiterate black woman of his research. During this time, doctors were undertaking a number of medical procedures on African American women without their knowledge, let alone their consent. Some African American women were sterilized and their doctors never told them. In the infamous Tuskegee Syphilis Study of 1932, white doctors injected black men with syphilis without their knowledge, to study the natural progression of untreated syphilis. Lacks was just another example in which black bodies were seen as expendable commodities by white researchers and doctors who held little regard for the individual or their families.
In fact, Henrietta’s family was unaware of her strange celebrity until 1973. Then news was met with confusion and anger. Some members of the family felt that they’d been ripped off by the medical community and wanted some of the money Henrietta’s cells generated. For others, the revelation was the cause for embarking on a quest of understanding. Henrietta had her final child Deborah, and passed away a few months later. For Deborah, this was an opportunity to try to learn about her mother (and a sister who died in a mental institution) and to wrap her head around the confusing notion that her mother is both dead and alive. At one point, she goes to Johns Hopkins laboratory to “see” her mother for the first time.
“The Immortal Life of Henrietta Lacks” is a fascinating and well-written blend of science and history. It’s an intricately crafted investigation of a social wrong that led to scientific and medical miracles. I constantly found myself reevaluating what side of the argument I was on and hurting my brain with an endless supply of philosophical and scientific questions. What role should ethics play in the scientific world? Should scientists need to get consent from patients to use their samples to try and cure diseases? What kind of compensation should the Lacks family receive, or should they receive any at all? How dead can a person be if her cells a living vibrantly all throughout the world and space? It’s a tale about the wonders of modern science, the wonders it can perform and how easily it can exploit society’s most vulnerable people and everyone should read it. I wouldn’t be surprised if it became required reading in high school and college history courses.