One of my goals for 2012 was to begin reading non-fiction books. Typically, I gravitate towards fiction because it lets me escape the "real world" and live in fantasy. I get to live vicariously through characters chasing dreams I could only imagine, and living life with no limits. But, there's a ton going on in the world outside my window and I felt like it was time I began paying more attention.
After asking my Facebook friends for recommendations on books that should be on my reading list I settled on the Immortal Life of Henrietta Lacks by Rebecca Skloot. Several friends recommended my reading it, although only one had read it herself. After hearing her glowing review, I decided to make it my first read of the new year.
The Immortal Life of Henrietta Lacks is the story of a Black tobacco worker who was diagnosed with an aggressive form of cervical cancer during the 1950's. While undergoing cancer treatment at John Hopkins, Henrietta's doctors removed cells from her cervix without her consent to perform experiments on cell regeneration. Unlike previous experiments, those using Henrietta's cells were successful and resulted in the first strain of "immortal human cells." Despite treatment, Henrietta's cancer continued to spread and eventually consumed her. At the time of her death, Henrietta nor any member of her family was aware of the actions her doctors had taken and that pieces of her would forever live on.
The book is written by a woman named Rebecca Skloot who learned about Henrietta during a lecture in Biology class. During the lecture her professor explained that Henrietta's cells, HeLa as they are often referred, were integral to advances in modern medicine. He told the story of how her cells were taken from her without her knowledge and that she was black. Her professor offered no additional information on Henrietta or her family. Rebecca became overcome with questions and set out to learn more about this mystery woman.
As Rebecca researched Henrietta and her family, she eventually gets in contact with and joins forces with Henrietta's daughter Debra. The two set out to learn what exactly happened to Henrietta, and why the family was never notified that her cells were still alive and being used for research purposes. They travel between Roanoke, VA where Henrietta grew up, and Maryland to speak with family members and learn more about who Henrietta was and her diagnosis.
Throughout the book Rebecca makes historical references to race relations and policing of the medical field while discussing the issues related to Henrietta's situation. Racism, lack of governing within the medical field, and socioeconomic challenges all played in to the reasons why Henrietta's family was left in the dark. While they lived in poverty, struggling to pay their own medical bills, scientists were making millions off of manufacturing and selling Henrietta's cells.
The book takes you on a journey of discovery for the Lacks family. Despite challenges, they learn who Henrietta was, and how important she is to the medicine today. Her cells helped develop several drugs for the treatment of diseases such as herpes, hemophilia, and Parkinson's to name a few.
Overall I enjoyed the book. It was difficult for me to read, not because of how it was written, but because I was saddened by how unethical her doctors had been. Their actions lacked integrity, and ultimately resulted in their lying to Henrietta's family. Some may say it was "in the name of science", but in my book it's still wrong. People have a right to know what is being done to them, and how their information could be used in the future. While Henrietta's story is not exactly the same as those that participated in the Tuskegee Syphilis experiment, there are striking resemblances. In both cases Blacks were misled to believe they were receiving the best treatment available, when in reality they were the subject of tests and experiments without their "informed" consent.
Henrietta's family suffered both emotional and financial difficulty that could have been avoided had the medical community been forthright. Pharmaceutical companies made, and are still making, millions of dollars off of Henrietta's cells while her family barely lives above the poverty line. Where's the justice in that? There isn't any, and often this is the case when it comes to Black people and history. I suppose sometimes people have to go through things, painful things, in order to make tomorrow a better place.
One cool thing is that the author has created the Henrietta Lacks Foundation in honor of Henrietta and her contribution to the medical profession. According to the website, "the foundation strives to provide financial assistance to needy individuals who have made important contributions to scientific research without personally benefiting from those contributions, particularly those used in research without their knowledge or consent. The Foundation gives those who have benefited from those contributions -- including scientists, universities, corporations, and the general public -- a way to show their appreciation to such research subjects and their families." A portion of the proceeds from the book go directly to the foundation, and they also accept donations on their website http://henriettalacksfoundation.org.
I'm passing the book on to a friend, but would definitely recommend your reading it if interested. It's a fairly easy read, although there are a few sections that are somewhat technical. However, if I can follow them I KNOW you can. :)
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