Rebecca Skloot's The Immortal Life of Henrietta Lacks is every bit as good as I had heard. It mixes human interest with questions of essential fairness, seared over the fire of racial and class inequality in the U.S.
Like most nonfiction, it can't help but be about the writer's journey, though it's more honest about that reality than many books. Skloot uses her voice to let us begin to know Henrietta, whose cancerous cervical cells were sampled and cultured to become the source of great wealth for many people, but not her family; George Gey researcher, maker, and open-source pioneer who cultured the cells and developed much of the technology labs take for granted today; and Henrietta's children and relatives, especially her daughter Deborah.
The story of Henrietta's cells (called HeLa in the biotech field) reminds me of how infinitely complex our world has become. HeLa is famous among a large group of people, but I (along with many others, I'm sure) had never heard of it until Skloot's book started getting publicity last year. HeLa has been used to cure or treat almost every disease we now don't worry about, or can at least mitigate. We all benefit from the stolen and unknown.
It's a challenging story, full of revelations about modern American life. But the section that stunned me to tears comes late in the book, when Skloot and Deborah Lacks find out what happened to Deborah's older sister, Elsie. Elsie had some type of developmental disability, and had been sent to what was then called the "Hospital for the Negro Insane" in Crownsville, Virginia, around 1950. A photo of Elsie taken not long before she died as a teenager is described in gruesome detail, but not shown. Then Skloot writes:
The Crownsville that Elsie died in was far worse than anything Deborah had imagined. Patients arrived from a nearby institution packed in a train car. In 1955, the year Elsie died, the population at Crownsville was at a record high of more than 2,700 patients, nearly eight hundred above maximum capacity. In 1948, the only year figures were available, Crownsville averaged one doctor for every 225 patients, and its death rate was far higher than its discharge rate.... Black men, women, and children suffereing with everything from dementia and tuberculosis to "nervousness," "lack of self-confidence," and epilepsy were packed into every conceivable space.... When they had beds, they usually slept two or more on a twin mattress, lying head to foot, forced to crawl across a sea of sleeping bodies to reach their beds. Inmates weren't separated by age or sex, and often included sex offenders....It was hard to type that. I can't imagine being Skloot writing it, let alone Deborah learning this about her sister. Sometimes the story The Ones Who Walk Away from Omelas needs to be taken more literally than people realize.
I later learned that while Elsie was at Crownsville, scientists often conducted reseach on patients there without consent, including...[p]neumoenchephalography...a technique developed in 1919 for taking images of the brain.... drilling holes into the skulls of research subjects, draining the fluid surrounding heir brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. The side effects -- crippling headaches, dizziness, seizures, vomiting -- lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months.
There is no evidence that the scientists...got consent from either the patients or their parents. Based on the number of patients listed in the...study and the years it was conducted, ....it most likely involved every epileptic child in the hospital, including Elsie. The same is likely true of at least one other study... which involved inserting metal probes into patients' brains. (pages 275-276)
These were the good old days of the 1950s that some people want us to go back to so they can live their comfortable lives and pay lower taxes.
Rebecca Skloot has set up the Henrietta Lacks Foundation to fund scholarships and financial support for Henrietta's descendants and others descended from people who were used in medical research without their consent. The New York Times recently wrote:
Ms. Skloot contributes some of her royalties and speaking fees to the foundation...Ms. Skloot said that she expected a hefty donation from Harpo Films [production company for the HBO film based on the book], but that none of the large biotech companies that continue to profit from HeLa have yet to contribute.