The first time I heard of The Immortal Life of Henrietta Lacks, I was watching the Colbert Report. Colbert had Rebecca Skloot on the show as his guest, and as she started to explain what her book was about, I became perplexedly dumbfounded. A woman whose cells were taken by doctors without her permission and then cured into an immortal cell line that has translated to billions of dollars for the biological materials industry? And her descendents have yet to see a penny and are presently living in poverty in Baltimore? My curiosity was instantly piqued, and I vowed to read this book as soon as I could get my hands on it (thanks for the recommendation, Stephen!).
The Immortal Life of Henrietta Lacks is like a real-life manifestation of that old adage that says the truth is sometimes stranger than fiction. Our story begins in 1955 with Henrietta Lacks, a vibrant and wholly likable young black woman who goes to see a doctor at Johns Hopkins for extreme abdominal pain. The doctors discover a tumor on her cervix and try to treat it with radiation, which only makes it worse, until Henrietta dies painfully at the age of 31, her body riddled with cancer. From there, the story diverges into two parallel biographies. As it turns out, doctors extracted cells from Henrietta’s tumor without her consent and used them in cell culture research. There was something special about those cells, because they didn’t die, and in fact kept multiplying so fast that they were able to single-handedly create a multi-billion dollar biological materials industry that would give scientists and researchers all over the world easy access to generic cells that they could experiment on. HeLa cells, as they’re called, have played a hand in some of the biggest medical breakthroughs of the twentieth century, including the polio vaccine, gene mapping and in vitro fertilization. What’s even crazier? Henrietta’s family, her husband and five children, had no idea what Henrietta’s cells had done, or that they’d even been taken, for more than twenty years after her death. They never saw any money from the billions that HeLa had earned, and to this day, they live on food stamps and can’t afford health insurance. The rise of the immortal, billion-dollar HeLa cells is juxtaposed with the Lacks family learning to cope after the death of their matriarch, two stories that unfold almost completely independently of each other.
Obviously this book raises myriad questions on the subject of bioethics, but Skloot seems to hone in on two in particular: consent and individual ownership. When Henrietta went to Johns Hopkins in the 50s, the medical profession as a whole was much less strict about consent forms because they were not widely used; at Johns Hopkins in particular, doctors felt justified in taking biological samples, without consent, from their patients for research purposes because many of the black families that came in were unable to pay. The question that Skloot poses to the reader is whether or not the means (extracting cells without consent) justify the end (creating cells that have helped to find cures for diseases and saved the lives of millions); in Henrietta’s case, the answer is a resounding yes, but not all cases are so cut and dry, and the question of consent only becomes further complicated when human subjects become aware of what their cells are capable of, and capable of earning. Skloot uses the example of John Moore, a man who tried to sue for royalties when some of his cells were extracted from his body and became a highly profitable cell line, to get at the question of ownership: at what point do we lose our claim to ownership over samples (cells, blood, tissue, etc.) that came from our bodies? And do doctors have a responsibility to inform a patient, and share the earnings, if their samples become profitable? Moore describes his experience:
“It was very dehumanizing to be thought of as Mo, to be referred to as Mo in the medical records: ‘Saw Mo today.’ All of a sudden I was not the person Golde [his doctor] was putting his arm around, I was Mo, I was the cell line, like a piece of meat.”
This quote seems to get at the overarching theme of the book, which is the divorce of body and soul in medicine. It’s almost as if medical professionals are taught to completely compartmentalize humanity and science, to the point that doctors have done some really horrible things to living people (see: Nuremburg, the Tuskegee syphilis study) because they were viewing them as bodies, as blood and tissue and cells, instead of humans. Even the story of HeLa has historically dismissed the fact that this miraculous cell line could not have existed without the human they came from, a woman with a name and a family and toenails that were always painted bright red.
I think part of why I enjoyed this book so much is that it sought, from the beginning, to put humanity back into this story where it has largely been ignored. Skloot wanted to know who the woman behind HeLa was and went straight to the source, her family, to find out; but I don’t think even she could have anticipated the relationships that she would end up forming with Henrietta’s children, especially her daughter Debra. When Skloot first reaches out to the family, they’re all reticent to talk to her because they had been taken advantage of by journalists and money-grubbers before. But Skloot’s persistence, willingness to show them that’s she trustworthy instead of just telling them, and the extreme care she takes in her approach slowly but surely breaks down the Lacks’ walls and convinces them that she’s just as genuinely interested in what happened to their mother as they are. There were two scenes in particular that were really beautiful and poignant to read: one where Skloot takes Debra and Henrietta’s youngest son, Zachariyya, to Johns Hopkins to look at HeLa cells under a microscope (they didn’t even know what a cell was when Skloot first met them); the other, when Skloot and Debra go to Crownsville Hospital Center (formerly the Hospital for the Negro Insane) to gather information about Elsie, the sister that Debra never knew, who was committed for “idiocy” and died there as a teenager. There is so much humanness in these passages, so much past hurt being atoned for, so many questions being answered and a long-elusive closure being granted at last. As a reader, it’s not difficult to become attached to these people, to root for them and feel their pain and share in their joys, to feel a level of empathy that the non-fiction genre can rarely elicit. Skloot is a concise writer and a gifted storyteller, and the balance that she has struck between reason and emotion in The Immortal Life of Henrietta Lacks is, in large part, what makes this book really remarkable.
If you want a book that will teach you, horrify you, make you laugh, make you teary-eyed, and appeal to your left brain and right brain simultaneously, then I encourage you: read this book.