Book #126: The Immortal Life of Henrietta Lacks

Title: The Immortal Life of Henrietta Lacks
Author: Rebecca Skloot

When I was driving down to the St. George marathon a couple of months ago, I hit southern Utah and my radio reception got spotty. Eventually, I managed to pick up an interview in progress with Rebecca Skloot about the interactions she had with the family of Henrietta Lacks. If you're in academic medicine or married to a doctor, you probably know about HeLa, a line of cells that has been used to test many of the drug therapies in common use today. What most people don't know is that those cells come from a young African American mother of five who died of cervical cancer at Johns Hopkins in 1951. I was intrigued by the story, but it wasn't until I got home and my mother-in-law said they were reading a book about Henrietta Lacks that I realized that the interview with Skloot was about the book. I'm a sucker for engaging medical nonfiction, so I decided to read the story.

Skloot, who spent well more than a decade breaking down the Lacks family to the point where they were willing to be interviewed, and then learning their story, organizes the book in an interesting way. In alternating chapters, she tells the scientific story of the HeLa cells, from 1951 to the present, and she delves into the ramifications of taking those cells on the Lacks family. Back in the early 1950s, Hopkins was committed to providing charitable medical care for the poor black patients who lived in and around the hospital, and like many other research institutions, they sampled human tissue from their patients without their consent. This was during a time when researchers were trying to culture human cells, and had previously been unsuccessful. But when cells were taken from Lacks during a surgical procedure, they grew in abundance.

For many years, the Lacks family didn't know about Henrietta's contributions to medical science, but once they learned that their mother's cells were still alive, it aroused all kinds of ethical and spiritual questions for them: could their mother's soul find rest of her cells still lived, did they stand to profit from the donation of these cells, would physicians come after them seeking more samples? Henrietta's family suffered after their mother's death-- one of the children was mentally retarded (probably due to congenital syphilis), the others suffered from hearing loss, the boys got in trouble with the law, and the remaining daughter married abusive men. It was difficult for them to understand what it meant that their mother's cells continued to live.

On the one hand, I admire Skloot's diligence in pursing a relationship with the Lacks family. I think she genuinely cared for the family and felt particularly close to Lacks's youngest daughter, Deborah. It's obvious that Deborah was not an easy person for an educated white writer like Skloot to get to know and learn to love, but she did it. On the other hand, there are times when Skloot's story sounds somewhat opportunistic. There's a passage toward the end of the story, for example, where Deborah and Skloot are traveling together in Maryland, in search of the death records of Henrietta's oldest daughter. Skloot shows Deborah slurping from a bottle of benadryl, rambling incoherently, and coming back to knock on her friend's door a dozen times before bedtime. In that passage, Deborah looks crazy, and although I'm sure it's accurate, portraying that part of the story felt a little bit unkind.

All in all, it's a fascinating story. I was more captivated by the first half of the book than the second, but the whole thing is worth reading.