Cover of The Immortal Life of Henrietta Lacks
I feel that I have been so down on novels lately and that does make me feel a bit bad, like I am being a total miser. Maybe my current lack of luck in life (woah alliteration!) was seeping into my love of literature? Literature does not exist in vacuum, we all bring our past experiences and learning to books, so maybe I was bringing grumpiness and depression? Then I read this book, by a scientist no less, and I wanted to fall to my knees and thank someone for writing this. Literature is my religion and this book functioned as a sacred text that redeemed some of the bad literature I had been reading lately, with the exception of Amy Waldman’s The Submission of course.
What book causes such a stir? Rebecca Skloot’s The Immortal Life of Henrietta Lacks. I am not sure where to start with such a great piece of writing. I guess I’ll start with the premise. Let’s start at the very beginning; that’s a very good place to start. In the 50’s, when Jim Crow laws were still alive and well a Black woman by the name of Henrietta Lacks told some of her family that she thought she had something wrong inside of her womb. Time goes on and she delivers a baby, her fifth, and its gets worse and she’s sure something is wrong with her. She goes to the John Hopkins clinic where they tell her she has cancer. Being the 50’s before some of the great cancer breakthroughs, breakthroughs she will be responsible for, they pack radioactive material inside of her as a form of radiation. She doesn’t get better or recover. The cancer spreads everywhere at a pace that is both terrifying to think about and almost impossible.
She of course died leaving her 5 young children and her husband without a mother and wife. They ask her husband if they can take a sample and after first refusing he finally relents. Then starts the fame and immortality of Henrietta Lacks. Her cells are taken to a Johns Hopkins lab and become the first cells and one of a few today that just continually multiple; they are unstoppable. The scientist begins sending her cells to other labs, something that had never been done before due to fragility but was possible with such resistant cells. Companies were established that sold these cells (HeLa). Lacks’ cells became a commodity in a multi-million dollar business. Her cells contributed to cures for polio, cloning, cancer treatments, and thousands of other ways we can only begin to imagine.
Millions, if not billions of dollars were made on the HeLa cells. Flash forward to her family, many of whom received little education. Her youngest son spent time incarcerated and he says he never felt right without a mother. A family that cannot afford doctor visits because they have no health insurance. Lacks’ own children poor when their mother had sacrificed her life for science advancement. Companies were making million of Henrietta Lacks and her children have never seen a dime. In fact, their mother faded into memory and due to patient confidentiality laws, no one should have ever known who the cells belonged to, but a doctor released information they shouldn’t. The rest of the book composes of how the Lacks’ family never even knew their mother’s cells had changed history until it became a source of media attention and how they dealt with it and how they didn’t. How little recognition they or their mother had received and a complex look at confidentiality laws and who owns the right to tissue and other complex ethical questions that make the reader uncomfortable.
Should we sacrifice scientific breakthrough and progress for the individual rights? Where is the line? Do we get a say once we die? Should the hospital and the companies pay Henrietta Lacks’ family an honorarium, should someone apologize, should there be a memorial to this woman? If the family did receive a settlement or an apology or a memorial is that enough?
The question I am most stymied by has to do with the book’s author, Rebecca Skloot. I am encouraged that she investigated this topic and brought light to some uncomfortable but necessary questions. Also, the fact that she got close to the family and Lacks’ daughter Deborah, now deceased, shows she has heart. But by writing about this family an going into such detail about their lives ups and downs is she doing the same thing to Henrietta Lacks and her family that Johns Hopkins did when they took her cells and gave them away to individuals who began selling them and patenting them? Is it like reliving a rape? If a woman is raped and you make her recount what happened in a court room or have her sit in the court and watch the video of it happen, isn’t that rereaping the victim? Making them relive something awful? How is it helping the family? I will say while Skloot did create a foundation, the Henrietta Lacks Foundation, it did not contribute all of the money to the family. The Lacks’ family was upset so many people made a profit from their mother but isn’t Skloot doing the same? She did not purchase Deborah’s headstone when she died, a woman she had become close with. Is that wrong? It definitely makes me uneasy and makes me think of a person’s image/body. Who owns our own body/image because it clearly seems that we don’t own our own bodies.
After all is said and done, I did enjoy the book and I wish Johns Hopkins would offer that family free treatment for the rest of their lives as an apology and that some sort of memorial was built for this woman. Doesn’t she deserve that after all she and her family went through and continues to go through? Just some food for thought…
lipstickmoonlight 