In 2010 Rebecca Skloot published her debut book, The Immortal Life of Henrietta Lacks. The book received so much acclaim that Oprah Winfrey acquired the rights to the book in 2010 and plans to make it into an HBO movie in partnership with Alan Ball, however HBO has yet to set a release date. It is the story of one of the greatest scientific research breakthroughs of all time and how Henrietta Lacks, a black woman, is responsible for it without her knowledge or, more importantly, her consent. The following summary appears on Goodreads.com:
Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells were taken without her knowledge and still live decades after her death. Cells descended from her may weigh more than 50M metric tons.
HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.
The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s, her small, dying hometown of Clover, Virginia — wooden slave quarters, faith healings, and voodoo. Today are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.
Little was known about HeLa cells by scientists. All they knew is that these cells had been alive since the 1950’s. At times, this remarkable find was attributed to her as merely a “black woman”. Rebecca Skloot recalled hearing about her very briefly in class one day. She later set out to discover who Henrietta Lacks was. She was met with suspicion when she first encountered the descendants of Mrs. Lacks. The history of the family is somewhat convoluted yet Ms. Skloot sticks with it until she is able to uncover the story.
Henrietta Lacks went in to Johns Hopkins because she was ill, later diagnosed with cancer. She, of course, didn’t receive the best treatment but something astonishing came out of that experience. Doctors and scientists realized her cells never die. The author does take time to explain the biology of what that means in the context of scientific research. Essentially her cells reproduce an entire generation every 24 hours. As the story goes along the audience learns the family of Mrs. Lacks was never compensated for the billions of dollars selling those cells has generated, still generates to this day. The position of medical researchers is that her cells were discarded.
What Worked For Me
First and foremost I was comforted to see the high level of compassion with which Ms. Skloot treated the subject. To be frank I had concerns about a white woman telling this very gut-wrenching story of medical experimentation on a black woman. In America, and abroad, there is a long history of medical experimentation on blacks from slavery to present day. My fear was that this story would be treated as just an unfortunate part of American history rather than as a means to expose the truth behind one of scientific research greatest finds. It’s clear from the author’s experience that the family of Henrietta Lacks felt the same way. Rest assured that Ms. Skloot delivers truth with compassion.
The book is well researched as the author sought to uncover the truth. Though she was met with suspicion, indifference, and at times incredulity she persisted in her endeavor to bring to life Henrietta Lacks’ contribution to modern medicine. It’s clear of Ms. Skloot’s passion for this topic as she researched well enough to provide the audience with a chronological telling of how these cells came to be in the possession of medical researchers.
Rebecca Skloot distills the importance of HeLa cells. I fancy myself a geek and understand most basic scientific concepts, I have to admit I didn’t understand going in what difference cells that don’t die make. I figured if cells die just get more. The author does take time to explain in an easy-to-understand way why cells that reproduce every 24 hours is important to science. Unfortunately, it was this very reason why Mrs. Lacks’ cancer was so aggressive. Not only did her healthy cells regenerate that quickly, so did her cancer cells.
What Didn’t Work For Me
Not that this has anything to do with the author, but I would have loved seeing this book written by a black author. I think there can be an inherent resistance to having “our” stories told by those outside of the race, as if we are almost on display at the zoo. Again, that has nothing to do with writing of this book.
There wasn’t much I didn’t like about the book. It was well researched and unfortunately there are just some facts that are lost to history. Poor blacks, especially in the south, were treated as expendable. Medical records are hard to come by and family history can also get lost as well. These days we can chronicle our lives electronically and upload family photos to the cloud. But then a family’s history was conveyed primarily through stories. There are so many parts of the Henrietta’s life that I would like to know more about.
“Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as resaerch subjects as a form of payment. And as Howard Jones once wrote, ‘Hopkins, with its large indigent black population, had no dearth of clinical material’.”
“What we do know today, Invitrogen sells HeLa products that cost anywhere from $100 to nearly $10,000 per vial. A search of the US Patent and Trademark Office database turns up more than seventeen thousand patents involving HeLa cells. And there’s no way to quantify the professional gain many scientists have achieved with the help of HeLa.”
The Immortal Life Of Henrietta Lacks is a winner. This book is so well-written and researched that as the reader you walk away feeling the angst of the family and angry yourself. This is a must read for all Americans. Black women are often vilified in the media, at work and randomly. A black woman, even though through accident of birth, is responsible for providing a pathway for the most significant medical breakthroughs in modern history. And it will likely make you angry that she didn’t know it, didn’t consent to it and her family continues to live at or near poverty. Though, in 2013, the National Institute of Health, NIH, provided a privacy agreement to the family. The Henrietta Lacks Foundation was established to not only help the Lacks family but anyone who has been harmed by medical experimentation without their knowledge or consent.
It is through this and many other horrific instances of medical experimentation on African Americans and the poor in general that modern informed consent laws have come into being.
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