More Than I Thought I Was Getting

When I set out to read The Immortal Life of Henrietta Lacks by Rebecca Skloot, I thought I was going to be reading a biography of the woman whose cells were used as the basis of a multitude of scientific studies that led to some breakthrough medical discoveries, such as development of the polio vaccine. I got that, but what I hadn't expected were all the other stories that were wrapped in with Henrietta Lacks' story.

First, the biography. It was relatively brief, because Henrietta Lacks was quite young when she died of aggressive cervical cancer. But Skloots used the sources she had available to try to reconstruct the life of the woman, not just the medical phenomenon. Henrietta had five children at the time she contracted cancer, including a baby who was born after the tumor was already growing. Skloot's narrative does a good job of portraying the struggle Henrietta and her husband had in trying to maintain family life while Henrietta's health rapidly deteriorated. The parts about the pain Henrietta was in and the extent of the cancer were heartbreaking.

There's also the story about the cells and the doctors and researchers who took them - without Henrietta's consent. What started as a "routine" collection of samples of the cancer cells and healthy cells became anything but routine when the researchers discovered that these cancer cells, unlike other human cells that had been tried, not only survived in culture but thrived and continued to grow. The cells were labeled "Hela" for the first two letters of Henrietta's first and last names, and they were the first "immortal" cells; they are still growing and being used for biomedical research today, more than 70 years after Henrietta herself died. Skloot's book reviews the tissue research field that exploded because of Hela.

Another layer of the story is the consideration of justice and rights. Henrietta was black and poor, and she was sick in an era when informed consent didn't exist. Some people feel she was exploited, since Hela cells made billions of dollars for biomedical corporations ,yet her family received nothing and lived in desperate poverty. Henrietta wasn't even widely recognized as the "donor" of the cells until more than 20 years after her death. It really wasn't until Skloot's book that Henrietta received any kind of recognition as the source of this invaluable research tool. The book tells how the media swooped in at different points to do a feature story or whatever, but there was no real effort to know Henrietta Lacks, just her name (for a long time, the cells were attributed to "Helen Lane"). Henrietta doesn't even have a tombstone; it's not known for sure where her grave is, only that she's buried near her mother.

This discussion of justice and rights went beyond just Henrietta and her family, though. Skloot outlines the development of the concept of informed consent in research and medicine, as well as laws and court cases related to the use of tissue collected from individuals. Basically, there's no ownership of your tissue once it leaves your body and you leave the doctor's office. That little biopsy I had done once to test for skin cancer may be in a lab somewhere, being used to develop the next cure. However, if that cure were to make huge amounts of money, I'm not entitled to any of it. (There was an afterword to the book that discussed this issue in depth.)

Finally, there was the story of how the story came to be told. Skloot tells about her efforts to contact Henrietta's children to give her interviews for research about Henrietta. The family had been so ignored and exploited (including by a con man) that getting their cooperation was a hard sell. No one, it seems, before Skloot, really took the time to explain what was going on with their mother's cells when researchers came to collect blood samples from the offspring for genetic testing. There's one story about a researcher who hands a genetics textbook to Henrietta's daughter - who hadn't graduated from high school - like that would explain everything. One of my favorite parts of the book is when Skloot takes the daughter and one of her brothers to the lab of a young cancer researcher named Christoph Lengauer, who took the time to explain things and actually to let the family look at the cells under the microscope. It was pretty touching.

Skloot ends up having a relationship with the family, especially the daughter, (Deborah) and this book is partly about the development of that friendship. The climax of the book, in a way, is a road trip Rebecca and Deborah take to find out what happened to Deborah's older sister, who had mental retardation and epilepsy and had been committed to a hospital for the "Negro insane." (I'll give you a hint - it wasn't pleasant.)

So, to sum everything up, I thought I was getting a simple story and instead found layers and layers of story. I can't say I understood everything about the Hela cell research, but it was pretty fascinating to think that so many of the things we take for granted in the medical field today, from the polio vaccine to those consent forms we sign every time we go to the doctor, resulted from the "immortal life" of Henrietta Lacks and her cancer.