Non-fiction / Biography / Science
Henrietta Lacks, a black woman in the 1950s was diagnosed with cervical cancer. Without her knowledge, during her treatment with radiation, doctors at Johns Hopkins removed cancerous cells from her tumors and kept them for research. Her cells were unusual because they could be cultured and quickly reproduced, which was invaluable to cancer research, polio, cloning, in vitro fertilization, the eventual discovery of extra chromosome 21 of Down syndrome patients, as well as the effects of steroids, hormones, and vitamins. Doctors began selling the cells to researchers around the world, turning it into a multibillion-dollar business. Twenty-five years later, the family found out by mere coincidence that the well known HeLa cells, as they are called, were used in such a way, without consent or compensation, and are still in use today.
Who would have thought that a book about the removal of a woman's cancer cells would be so interesting. Oh but it was! I loved this book. Rebecca Skloot is talented. At first I thought who cares if someone took cells from someone's body and used it to help millions of people around the world? That would be a good thing, right? But that's when it got interesting, because Skloot showed the ethical and racial issues that were involved and it just sucked me right in.
It was the 1950s, and because of where science and medicine was at that point, and because Henrietta was black, she received substandard care for her cancer. But she placed her trust in the doctors because she had no choice; she had a husband and five children at home to care for. One of those children, Elsie, was placed in the Home for the Negro Insane. (Skloot tells of Elsie's deplorable story as well.) Despite treatment, Henrietta died at age 31 from uremia, a complication from the cancer that took over her body.
The author first heard Henrietta's story as a 16-year-old high school student and then again 11 years later after reading a scientific paper titled "The HeLa Cancer Control Symposium." She called the author of that paper and asked if he would put her in touch with the family. At first they didn't want to speak about their mother or her cells, but she persisted. After a year of unreturned messages, Skloot eventually gained the trust of Henrietta's daughter Deborah, who because of her own curiosity, agreed to provide information for the book.
Skloot did a beautiful job of moving between the scientific and human parts of the story. I came to know each family member and how they felt about their mother and her cells, and what they were going through in their own lives. Despite the huge financial success of their mother's cell business, each member of the Lacks family was uninsured and struggled through health and financial issues.
Although the HIPAA law has since been created to protect privacy, and guidelines (which aren't laws) are now in place regarding informed consent, the question of tissue and cell ownership remains. Any time you have an appendectomy, tonsillectomy, routine blood test or mole removed, doctors, hospitals and labs keep it. And store it. Forever. Kind of weird, huh?
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