I have to admit that 2016 did not start on a great note for me. There were constant troubles within my personal and professional life. And not to mention, the persistent anxiety whether I would be able to finish my thesis work on time and that too, in a satisfactory manner. Though it almost seemed at times that my research work would not be progressing as smoothly as I had hoped, one thing that continued to work well for me were my reading challenges. Counting from Bradbury's The October Country to the current one, The Color Purple by Alice Walker, I have managed to read four goods books in a span of two months so far. Though I did not not manage to write four good chapters of my thesis, I was certainly able to go through some epics works of writings. And the best part was that these books never took me away from my main work or disrupted my social life. In fact, they were finished over long metro rides between home and work. During those dull and crowded journeys, reading was really a great stress reliever that I found greatly therapeutic. Waking up and then getting ready on cold winter mornings is one of biggest drags of my life right now. Therefore to be able to prepare myself for the long hours of research work, engaging with these books seemed like the best way to relax and prepare my mind. And to be able to read from so many different genres, it not only added to that endless need for knowledge but also opened up my world a little more.
I am so glad that I had an opportunity to read a book as poignant and touching as
The Immortal Life of Henrietta Lacks by Rebecca Skloot. This book also took the longest to finish reading. Often, owing to the events happening in my real life, reading was constantly interrupted and many times I would forget the names and various other details in the book. But still, the wonderful sensitive narrative always managed to suck me back into the life of not just Henrietta Lacks but also the rest of the Lackses. This book is indeed a beautiful tribute to Henrietta and what her cells, interestingly called HeLa, have achieved for medical science. At the same time, it was also a touching and human portrayal of Deborah Lacks, Henrietta's youngest daughter, who struggled with abuse, poverty and depression but never gave up in her quest to know more about her mother who had died while she was still a toddler, At the time of writing of the book, Deborah was in her fifties with two young grandchildren. Sadly, she died shortly before the book was published.
This book for me was not just about finding the woman behind the famed HeLa cells but also a relentless quest by a daughter who went through many difficulties just to understand who exactly her mother was. It is painful when Deborah constantly mentions to Skloot in the book, how she wants to know what her mother's favorite color was or whether her mother had breastfed her. It is this longing of a daughter and the steadfast persistence of a science reporter that permeates the many strands of narrative in this book. It was also interesting to note how fiercely Deborah guarded her mother's meager possessions including her medical documents. Skloot was able to see these documents only after constantly reassuring Deborah that she was not trying to steal or profit from them as well as consenting to be accompanied by Deborah in her many research trips. Even after that, Skloot was allowed to look at the documents only under Deborah's supervision. Though frustrating and often paranoid, Deborah's need to hold onto these possessions showed the desperation to reach out to a parent who now lived only in photographs and shockingly in medical labs in form of living cells. I feel very grateful to Rebecca Skloot for never shying away from showing the rawness of Deborah's emotions and insecurities while trying to write an history of sorts of Henrietta Lacks and her 'immortal' cells.
I admit I was a bit wary of writing a blog post on this book. In fact, the more appropriate word than 'wary' would be 'intimidating'. Because the book encapsulates so many issues within its 400 pages, one feels very 'intimidated' talking about it because simply taking one issue would not do it any justice. I greatly commend Skloot's dedication as well as her patience because it seems pretty obvious from the book that her early research period was full of many snags and dead ends. At the same time, it does make a point to me that it takes that kind of passion and curiosity for your work in order to bring something out of obscurity and give it a history and presence that is rightfully deserves.
Frankly speaking, what I have learnt from this book is that to be entitled to a past or a history is indeed a privilege. Henrietta Lacks was a poor black woman living in the 1950s segregationist America. Her cancer cells were harvested from her dead body by the researchers at John Hopkins Hospital, without properly informing her husband, David Lacks of the need and purpose for those cells. Of course these cells went on to do great things in science especially in groundbreaking research on diseases including the polio vaccine. But for a long time up until the 1970s, many scientists and the media were unaware of the person behind the cells. In fact, when in late 1970s, when the media began to take a slight interest in the identity of the cells, George Gey (the scientist who had collected the original samples from Henrietta's body), gave out the name of the person as Helen Lane instead of Henrietta Lacks in order to maintain secrecy. All this while, the Lackses had no idea that so much was happening in medical research because of Henrietta's cells. However, further research made it necessary to trace the origins of the cells to the Lackses family and conduct blood tests on them. Even then, no medical personnel ever bothered to inform them about the full scope for such methods.
Scientific research had made the person insignificant in comparison to her cells. HeLa was a name and nothing more. To be able to put a face on that name and recreate a rich family history, Skloot has clearly done the memory of Henrietta Lacks a huge justice. Famed writer Susan Sontag once wrote, "
My library is an archive of longings." When Skloot describes Deborah's fierce protectiveness of her mother's things in her book, the first thought that came to my mind was that this was Deborah's archive of her mother and this was an archive of intense longing. However, this archive had no voice of its own as it had been repressed, silenced and eventually forgotten until Skloot came along. I admire how Skloot recreates this archives by travelling to Henrietta's hometown, engaging with the recalcitrant Lackses, talking to scientists and medical researchers involved and for just being stubbornly persistent.
Through a parallel narrative, Skloot also traces the question of consent of patients especially when scientists needed to take samples from them for research. She shows how during Henrietta's time, consent was not considered necessary and especially in the case of poor black patients, it was definitely not something to be bothered with. The Tuskegee syphilis experiment on homeless black men and the many medical studies conducted on prisoners without fully informing them of the consequences, were examples of this negligence of consent. Often the sufferers were those who were on the bottom end of the social spectrum coupled with the belief among many scientists that 'ends justified the means.'
This book is a thoughtful and somewhat neutral look on how much good science can attain when it is pursued with an enthusiastic urge to achieve wonderful things for humankind. But it is also a testimony of how often the pursuit this good can also mean overriding the 'human' in humankind to achieve lofty goals for the betterment of many. A retrospection within science is definitely needed without a compromise on its higher goals. I like to think that there is room for both good and consensual research practices and that they can exist side by side.
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