Quite simply, The Immortal Life of Henrietta Lacks by Rebecca Skloot is one of the best books I have ever read! Having finished it 48 hours ago, my head is still swimming with the implications of the points raised as a result of this woman’s life and her death. I am also incredibly impressed by how the author, Rebecca Skloot, tells the story of the Lacks Family. She weaves together the true events of an ordinary life that ended up extraordinary beyond measure. This story is about love, family, bioethics, systemic racism, trust, good journalism, important medical advances, faith, personal privacy, legal statutes, mental health and identity (in the form of how much do we know about our own family history, our personal interactions with social institutions and so on). The story of The Immortal Life of Henrietta Lacks is epic in nature but, the beauty of this book is that Skloot keeps things simple and humane; focussing mostly on Henrietta’s children and how they were affected by their mother’s death and about how the search for information changed their lives. This story will warm your heart, challenge your intellect and will dazzle you at how so much of what we take for granted in our own lives can be traced directly to Henrietta Lacks and what happened to her the moment she died. What an amazing tale this is.
I am going to discuss the book now. If you would rather not know what happens so that you can enjoy the book on your own then, stop reading by the end of this paragraph. If you are interested in the totality of this review then, feel free to read on. Either way, I thank you for stopping by and I encourage you to buy this book if you like non-fiction told extremely well.
Henrietta Lacks was a poor black woman who grew up near Clover, Virginia. She married a man known as Day and had five children with him. Their names were Sonny, Deborah, Lawrence, Joe and Elsie. The family lived in poverty. They lived in a time of racial segregation in America. As she turned 30, Henrietta Lacks developed cervical cancer. She was treated in the “coloured” ward at John Hopkins Hospital. She died from the cancer at age 31, leaving her husband and five children behind.
That’s the story. She grew up, got married, had a family and died. Like millions of people around the world, Henrietta lived an anonymous life; except to those who loved her. To them, she was a shining star. Her death affected all who knew her and changed the course of all of their lives. This would be normal under most circumstances. We all feel loss when someone we love dies. That is completely normal. But, the power of Henrietta’s story really begins the moment she died.
Henrietta died alone at the hospital. Upon her death, her doctor removed a piece of her cancerous tumour and sent it to a lab for further testing. He did not ask the family for consent for this procedure. It simply was done. At that time, the authority of doctors was rarely questioned; especially, by a poor black family against a white doctor at such a prestigious hospital as John Hopkins. But, more importantly, the Lacks family did not even know that something had happened that they should be questioning. They were told that Henrietta had died from cancer. End of story. The Lacks Family took possession of her body and buried her next to her mother in a field behind a barn on a family farm in Clover.
Meanwhile, doctors were routinely acquiring all manner of biopsies from patients and sending them to labs in the hopes that someone would discover a way of causing cells to remain alive after being removed from their host. Having cells that scientists could study and manipulate would allow them to seek ways of finding cures for many diseases that were plaguing people around the world. However, no matter what medium the cells were placed in, the cells always died shortly thereafter. That was, until Henrietta’s cells were tested. Not only did her cells not die, they thrived. They multiplied at a prodigious rate and remained alive indefinitely. In fact, her cells remain alive even to this day, 70 years after her death. Scientists dubbed her cells HeLa (after the first two letters of her name). HeLa cells have changed the face of modern medicine. They have been used to help develop vaccines for Polio, for Aids, for the Human Papilloma Virus (which causes some types of cancer) and were instrumental in helping scientists complete the Human Genome Project which involved learning about our very DNA.
Initially, HeLa cells were shared for free among geneticists, all in the name of Science. Much good came of this collegial approach. But, as in all things of this nature, it soon became commodified and soon companies were trading HeLa cells and making billions of dollars in profits. Good still came from this arrangement but now, HeLa cells were big business. Meanwhile, the Lacks Family knew nothing at all about any of this. They remained in ignorance and in poverty. Life was hard for all of them. Legal issues, addictions and mental illness were interwoven into the lives of the Lacks survivors. Anger and sadness mixed in equal measure for them all. One child, Elsie, was sent to a mental institution for “idiocy” and died there at age fifteen.
Where the story really got interesting for me was around the very fundamental human trait called Trust. Eventually, journalists began showing interest in HeLa cells and the medical advances that were happening as a result of them and they began asking questions about the origin of the cells. Eventually, those cells were attributed to someone named Helen Lane. Once a name was put forth, reporters began researching into “Helen Lane’s” life. Soon “Helen Lane” was revealed to, in fact, be Henrietta Lacks. The ensuing attention given to Henrietta was the first time any members of her family had been made aware that there had been anything done to her at the hospital and, as well, it was the first time they came to learn about her cells and how special and important they were.
Not surprisingly, the Lacks Family was angry that they had been excluded from something so personal and private. They felt that this was just one more example of “the system” ripping off black families. None of the Lacks family members had the education level to understand what cells were and why Henrietta’s were important. No one took the time to help them understand or involve them in any part of the science of it all. They were excluded again. The only difference was now, this time, they knew they were being left out. They felt slighted, disrespected and powerless to affect any change because of the state of their intellectual capacities, as well as, the state of their finances. There was never a realistic thought of suing John Hopkins Hospital for damages. They could barely pay for groceries, let alone a lawyer. The surviving Lacks Family members felt that Henrietta’s life had been violated in the most private and personal of ways. They came to develop a hatred for those HeLa cells because of the injury and loss they represented to the family.
Into this maelstrom of mistrust stepped the author, Rebecca Skloot. As much as this story raises issues like the necessity for “informed consent” from patients before doctors perform extra procedures, who owns your body parts once they are removed from your body and who governs what sorts of experimentation is done using harvested human cells, the real backbone of this book is Ms. Skloot’s relationship with the surviving members of the Lacks Family. It is so heartwarming to see the transformation that takes place……over the course of ten years(!!!)……in the Lacks Family members as they learn to trust again and begin to see Ms. Skloot as being as important and valuable to them (in terms of helping them understand Henrietta’s story) as Ms. Skloot views them to be in helping her tell Henrietta’s story. Faith and Love and Family are so important in all of our lives. The Immortal Life of Henrietta Lacks shows this better than any book I have read before.
Proceeds from the sale of this book have been set aside and used to established something called The Henrietta Lacks Foundation. The idea behind this Foundation is to honour the life of Henrietta Lacks, giving her credit as the original donor of the HeLa cells. It is, also, hoped that scholarships will be established so that future Lacks children, as well as, other children from homes that would be considered “under-privileged” would be able to afford a good education so that they could make the most of the opportunities presented to them in life.
Finally, before I close, I want to take a moment to help avoid making villains out of Henrietta’s doctors and of the medical establishment, in general. This book stresses that, although informed consent was never granted for the extraction of Henrietta’s cells, that it was common practise “at the time”. Since then, whenever we have to go to the hospital for a procedure or treatment, the signing of consent forms is now standard practise. It is that way because of Henrietta Lacks. Polio has been cured because of Henrietta Lacks. The AIDS vaccine was developed because of Henrietta Lacks. Cancer may, one day, be cured because of Henrietta Lacks and those wondrous, immortal cells of hers. What a life! What a legacy to leave behind! What a book this is! I cannot recommend The Immortal Life of Henrietta Lacks by Rebecca Skloot, highly enough. Please go to your local book store or public library and read this book for yourself. You will be changed because of it, I guarantee it!