I mentioned this on Twitter earlier, but The Wire: The Complete Series
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Rebecca Skloot’s The Immortal Life of Henrietta Lacks
Henrietta Lacks was a poor African-American woman who died very young of cervical cancer in 1951, after receiving radiation treatments at Johns Hopkins that started too late to save her very aggressive form of the disease. A researcher at the school had been trying for some time to grow a long-lasting culture of human cells without success, but the sample he took from Lacks’ cancer turned out to be, as the book’s title implies, immortal, launching a scientific revolution that is partially responsible for many medical miracles we take for granted today – and a commercial revolution from the sale of these “HeLa” cells that has paid her descendents a grand total of zero dollars.
In 1951, there were no laws on medical privacy nor were there laws or even good guidelines on informing patients about what might happen to tissues or fluids collected from them during treatment; a doctor or hospital could use extra samples for research and the patient wouldn’t even know about it, let alone require compensation. A lengthy medical case decided in 1990, Moore v. Regents of the University of California, would later establish that the patient has no right to financial remuneration from such usage (unless, of course, he established those rights in advance, such as by patenting any unique genes*), but in Lacks’ era there were no such rules, nor even understanding that these biological samples could have substantial financial value. (The researcher in the Moore case, David Golde, comes off as particularly sleazy in Skloot’s retelling. He took his own life in 2004.)
*This part resonated a little more strongly with me, as my daughter and I do share a unique mutation that causes an inborn error of metabolism called 3MCC, in which the third step in the breakdown of the essential amino acid leucine produces the “wrong” waste product. (The disease isn’t unique, but our mutation had not been seen before. We’re special like that.) I’m largely asymptomatic beyond an inability to build muscle mass, but my daughter has been hospitalized once for a metabolic crisis and has now been a vegetarian for almost three years to avoid excessive protein intake. I’m still trying to get an answer from Children’s Hospital in Boston on their policies in this area.
What’s worse in this case, however, is that Lacks’ family – widower, siblings, and children – were completely unaware that her tissues had been taken, were being used in research, or had generated millions of dollars in value for others. The family, still poor, still mostly uneducated, and without health insurance, learned about HeLa in the 1970s, and it created a mixture of emotions ranging from fear to anger to wonder (including whether their mother could “feel” what was being done to these cells) that opens up windows on to racial inequalities, , medical ethics debates, and the conflict between public good and privacy rights.
Skloot herself worked on this book for nearly a decade, largely because the Lacks family, scarred by past media attention and con artists looking to latch on to their plight, resisted her efforts to interview them for the book. She eventually forged a strong friendship with Henrietta’s daughter Deborah, a fascinating woman whose emotional growth was probably stunted by losing her mother at such a young age yet who abounds with manic energy that drives her (and Skloot) forward on the research path. Deborah never seems to think of the compensation question, but simply wants to learn about her mother and about what has happened to her cells, perhaps to create a connection that was denied to her when her mother died.
The Lacks family gives the book the narrative structure it needs – the rise of HeLa cells from their origins to a major scientific breakthrough would make for a nice pamphlet, but doesn’t have the drama to drive a work of narrative non-fiction. Following the Lacks family’s struggles from losing Henrietta, from media coverage of the HeLa cells, and from their outrage at how their mother’s cells were used without consent, compensation, or even the correct name (she was often referred to as “Helen Lane” in medical journals), makes the book so powerful. The book requires no knowledge of science beyond a high school biology class, as Skloot provides sufficient explanation of cell structure and replication for anyone to follow along, and her presentation of the ethical issues involved is extremely balanced and surprisingly dispassionate for someone who became very close to the human subjects of her research. As easy as it is to react to the Lacks saga by arguing that her family should at least have been paid after the fact, Skloot points out through her story that it’s not even clear who would pay her (the oncologist who harvested the cells didn’t profit personally from them), and that many of the leaps made through the use of HeLa cells for testing, like Jonas Salk’s polio vaccine, relied in no small part on the easy availability of these cells. It’s as complicated as any good story should be, informative, emotionally involving without resorting to sentimentality, and gives you enough of both sides to make you angry and make you question your own outrage as you read.