Title: The Immortal Life of Henrietta Lacks
Author: Rebecca Skloot
Publisher: Crown (Random House)
Pub. Date: February 2, 2010
For some reason, I never paid much attention to this book when it first came out. I don't know that I ever read the synopsis or even realized it was non-fiction. Then it started appearing on "best of 2010" lists all over so I took a look. Maybe it was knowing the praise it had already received, but I was immediately intrigued and decided I had to read this.
Henrietta Lacks was an African American woman who died of cervical cancer in 1951 while in her early 30's. During this time of segregation, Ms. Lacks was treated on the "colored ward" of John Hopkins Hospital. Prior to her death, her doctor had taken some cervical tissue for biopsy and kept some of the cells. The cells were taken and kept without Ms. Lacks's knowledge or consent. Ms. Lacks's doctor, George Gey, essentially landed on a gold mine: Henrietta's cells continued to grow and multiply at an astonishing rate and became the first "immortal" line of cells. Whereas most scientists had difficulty figuring out how to culture cells so they would stay alive, Henrietta's cells continued to divide indefinitely. The potential for the use of the cells was, then, unfathomable.
Dr. Gey started using these cells for research and sent cells to researchers around the country for use in their research as well. Henrietta's cells became known as HeLa and are still used in research today. The accomplishments that are attributed to research with her cells is astounding. Research using her cells led to the vaccine for Polio, which is one of the most significant achievements. However, there are a host of other things her cells have contributed to including in vitro fertilization, cancer research, effects of radiation on cells, discovery of DNA, and her cells have even been sent to outer space to research the effects of space on human cells.
Henrietta's family was in the dark about her legacy until twenty years after her death. And they only learned about "the cells" because not only did some random reporters start approaching them, but the doctors at John Hopkins also approached them for "testing" when in reality they were looking to acquire cells from each of them to compare to the HeLa cells.
There is so much more in this book about the infamous cells, what they were used for, and the scandal associated with it. There was a moment near the beginning of the book when I wondered how an entire book on this topic could possibly maintain my interest, but it really did. Although there's so much to be said about the cells themselves, there were other aspects to this book as well. It was about Henrietta's family, the controversy (that continues to this day) over whether or not we have rights to our own tissues, about race, and medical testing in general.
Henrietta's family lived in poverty. They suffered from medical ailments because they couldn't afford health care. They were limited in education and couldn't really even understand the concept of Henrietta's cells once they learned about them. In many ways they were also exploited as a result of their lack of knowledge. For years after having samples taken from her, Henrietta's daughter, Deborah, thought she was actually being tested for the cancer her mother died from. Researchers and reporters came knocking on their doors throughout the years, yet never provided the family much information at all. And though the family thought it was unjustified that their mother's cells were used without anyone's knowledge, they didn't think to hire a lawyer or pursue it any further. (Of course, in today's litigious society, babies are practically born suing doctors for snatching them from their cozy wombs so had this occurred 50 years later it may have been different).
The author, Rebecca Skloot, provided a lot of material to mull over as it pertains to human rights. It wasn't until within the last 30 years that informed consent even became required, much less regularly practiced. But even though we've come far, these types of things continue to happen. In fact, there really is no recourse for our tissue samples being used for research since, technically, it's considered "waste" that we have "disposed" of and is, therefore, no longer ours. Yet, if the topic of human rights and medical testing doesn't make you squeamish enough, let's bring race into it. Remember, it wasn't until even the 70's that the Tuskegee Study (in which African American men with Syphilis were unknowingly tested by not being given readily available treatments) was officially discovered and terminated. Many still believe that some of these men were specifically infected with Syphilis by doctors for research purposes.
It wasn't so long ago that some colleagues and I were having a conversation with a fellow colleague who is a professional, well-educated, African American male. We were talking about medical issues and he hesitated, stating he felt uncomfortable seeking medical treatment because of the "lore" that was unofficially passed through his family about African Americans being unknowingly used as research subjects. He believed it was happening to this day. (Maybe it is... we wouldn't really know if you think about it). He went so far as to say that if he were being operated on or was on his deathbed and a rich, potential benefactor were in need of an organ, there is some thought he would not be saved on purpose so that his organ could be used. I think most of my colleagues and I were shocked at this belief system. But, after reading this, I can see why such paranoia exists. Rebecca Skloot didn't just skim the surface with information on the HeLa cells; she interacted with the family (gaining their trust was no easy feat) and brought the family to the forefront. She explored the effects these ubiquitous cells had on the family (and oohhh did it affect them).
The research in this book was well-done, the writing well-done, and the human aspect of it well-portrayed. I learned a lot from this book about an important aspect of science - the cornerstone of cellular research -- and also had quite a lot to think about. And the effects this whole thing (even the writing of this book) had on the family was profound. Definitely a worthy and significant read.