When I first read a New York Times Book review of this, I was absolutely blown away by the possibility that one of the most used cell lines in the world came from a person most of us hardly knew. As I stared at the letters in bold across the cover..H..e..L..a…I was amazed that it had never been obvious to me those letters were initials. I went on a spree of trying to find out who this person was, and immediately began educating myself about her life, reading this book, frequenting Wikipedia, and just starting in fascination about the whole scientific process that gave rise to such an important contribution.
It wasn’t until I had gotten pretty far into the book, reading it on the bus, the train, and at home that I had a very sad realization. My curiosity about this woman, my questions, were in many ways the same as those her own children and family members had. The only difference was that I, as a student of science, was able to comprehend the notion that this woman’s cells were spreading throughout the world and becoming vessels for various scientific trials, some of which would lead to the creation of important vaccines, for diseases such as Polio. I couldn’t imagine the fear of the unknown, the darkness of simply being unable to understand what was happening to a relative without the means to educate oneself. In addition, I was far removed from the difficulties, the racism, and the ethical dilemmas, being attached only so far as to puzzle these questions for myself. More troubling even was the notion that while most people now, scientists and relatives alike, admit that Henrietta Lacks was abused and taken advantage of, few have stopped to realize to what extent this abuse has continued throughout generations of her family. The racism has has become more pronounced today, but unethical people are numerous, and it is easy to take advantage of a family who cannot understand the nuances of their situation. It broke my heart to read about the con artist who tried to take advantage of the Lacks family through law suits and manipulation, after everything they had been dealing with already.
Most surprising to me however, was how much this book put into perspective the changing times we live in. The time-line at the beginning of each chapter highlights the simple but devastating fact that it was not so long ago that racism and class-ism ran so deep that doctors had no ethical or moral dilemmas about experimenting on prisoners, the poor, the institutionalized, or the uneducated. As this book tracks the formation of key scientific legislation in this country, one issue I felt was underscored which should be given more consideration today. The Scientists themselves would cry out how laws protecting privacy and patient rights would slow the progress of science and lead to stalling of research, eliminating the possibility of saving countless lives. I believe this should be a non-issue. We should not give personal freedoms a lower priority than scientific progress, otherwise what are we fighting to protect? We cannot belittle the lives we are trying to save, or claim that one life means more than another.
Ironically, the only man interested in protecting Henrietta’s privacy and in some ways, her patient rights, was the original man who cultured the HeLa cells and gave them up for research in other labs. He perpetuated a host of misinformation and ignorance of the cells’ existence to the family for over 20 years, by refusing to release her real name to the public. While he meant well, the real crime committed was to not inform the family the minute the first publication using her cells was released.
This is one of the first works of non-fiction which had me riveted from the beginning, and I encourage everyone who hasn’t considered reading this book to read it, because even if you aren’t interested in cell culture like I am, there are human issues that are touched upon which transcend the scientific world and make us question not only our history as a country, but also the possibilities for our future.
p.s. If anyone wants to borrow this book from me, you’re welcome to it!