I couldn’t find the strength within to prepare myself to read this book. Even now after I’ve finished the pages, I felt the lingering pain and despair over the unfortunate events upon the Lacks family that their lives inexplicably centered around the HeLa cells. Actually, this book plain horrified me in so many level. Published right into my second semester of my third year in Biomedical Science, I have heard about the book from my lecturers who have tried to explain the significance of the HeLa within the scientific community in some of the lectures but never did I realize the atrocities people did to Henrietta herself. These ‘people’ -scientists, lecturers, researchers around the world who I have great deal respecting- done great error to this one woman and her descendent and never did it occur to me the great injustice that was committed upon them. Another thing this book never lacks was oversimplification. The book detailed in great length about the consequences from the ethical mess that lead to HeLa’s cells.
Again, I was horrified. I used to be quite enamored with the idea of continuing my studies doing medical research but I decided against it (even though UKM kept pestering me to register for a masters program but honestly do people think becoming an RA and cash-strapped research student as fun?) and somehow I was quite glad I didn’t take that path only to lead back to this novel.
I was that kid who sit across the room that does cell culture and have friends who did cell culture (mine is more a biochemical research with HPLCs and spectrofluorophotometers) and never does it occur to me that I have been in a room where people cultivate HeLa cells which these days people test supplements and stuff on it. Here’s the thing about being a research student (or any medical field really), science can desensitize you. Even in WWII, you could hear various human experimentations done by the German and the Japanese scientist only to find that it continued on mid-50s in America and that there was no clear regulations or laws in place until very recently.
“The Immortal Life of Henrietta Lacks” told in a series of hard scientific fact that was enough to make a non-Science major understand the book and also another part that was part memoir of Henrietta Lacks and the author’s story around the Lacks family. As said in the prologue of the book, Skloot is very adamant on being faithful to the novel down to make the people came alive. It amaze me how she retain the words said by the people, the right atmosphere and their stories which made them believable and realistic. The care that Skloot does in making the book authentic was again displayed and detailed in her acknowledgement and the references in the end in the only possible manner that was similar to academic writing. Unlike any other memoir I’ve read, TILoHL is clearly well-written and well-researched by the author and you could even swore you felt the tears, sweat and blood of the author narrating the entire story in her voice and also in her professional voice.
Unabash by the implication she detailed mostly against the corporate science which she never hold back and supported by evidence, the details of loophole in ethics from the 50s and on with the story of other similar cases, the significance of the HeLa cells and some of the blatant ignorance prevailed upon the Lacks which I believe affected me in everyway. Why not? By this time, millions and millions of people are indirectly affected by Henrietta’s cells. The medical researches, the pharmaceutical research, the vaccines, the study on biology, chemistry, pathophysiology, genetics, pathology, microbiology, cellular biology etc, it was endless. Never have it occurred to me that the word some of my old coursemates complained to me with their haggard looks like “Syira, tak suka la buat research cell ni,”, “Benci la. Kontam lagi!” etc… was actually related to HeLa cells. In fact, HeLa was one of the most common contaminants in cell culture as it was an immortal cell line which somehow does affect other cells and with the ability to even float in the air. One of the most frightening thing about this about research done on people after the doctors inject HeLa cells on people and that people actually developed cancers.
Halfway of this book, I am pissed mad about these ‘professional’ folks. Albeit I was born in the age where we have multiple of laws and ethics done to support the research and the fact that Malaysia’s research industry never have that dark mark in history nor I’ve heard my senior professors have a hand on human experimentations unlike these infamous research universities so in a sense, I am glad about it but also still appalled by the mess of these so-called researchers. I knew that the world war was one of the things in human history that spark a revolution in science but for things to happen to the Lacks, in my parents lifetime ironically (both of my parents are science graduates in 70s when the HeLa cells really reach its infamous status). It is frightening and the message present in this book made me realize that a lot of the knowledge I’ve obtained from being inside ice cold lecture halls sitting, listening and jotting down notes came from this woman who people misdiagnosed her, people took her cells without permission and then mass market it to researchers around the world so they could test it with toxins, chemical and even nuclear bomb.
Early 2011, several John Hopkins professors came to my class talking about MD programmes and twinning and giving out application for us about the program and how they greatly interested in taking biomedical students to do masters with them. Now I’d wish I had read this book earlier and directly ask about Henrietta Lacks on them instead of talking about what differences MD and stuff. From the looks of the book, I can’t find the fault with John Hopkins either since it was set during the time when virtual ignorance and racial segregation was still active then and that people can make mistake and no one can predict the future. But come to think of it, most of my lectures is included in this book even briefly but it exist. I’d wish Dr Rohi pressed students even more to read this book because this book are effective as a refresher to cellular engineering and for those doing final year projects on cell culture. The significance of this book worth more than just photocopies lab manuals you get from laboratory technicians. For what its worth, if you are my junior or studied the same field as I was, this is a definitely must read.
In the end, I still couldn’t stop myself from being emotionally compromised by this book in so many level. Anyone could talk about how wonderful prose the author use to describe the family, the clinical way she tried to explain scientific lingo without condescending or confusing her readers, how she was able to make the book accessible to read and to understand with bare minimum biology knowledge you could get out of school. As much as it was controversial as it open a lot of cans of worms from the details of murders, dark history around the Lacks, down to the names of people implicated around the HeLa Cells, the obvious ethical menace by well-known companies that profited greatly from the distribution and commercialization of HeLa cells and the persistent clear message in the end about the consequences against the Lacks family committed by various individual in this book, “The Immortal Life of Henrietta Lacks” isn’t a book you can ignore and put away just because it have massive amount of ugly truths that you dislike to read. The reality is, the effects of the book is more real than ever and everyone is indirectly affected by her. And that is immortal.
Sincerely, I do hope the Lacks still fight for HeLa cells. At least sue the companies that profit heavily from their mother’s cell. I do agree when Skloot talk about their genetic privacy rights which after all these years, the scientific community took great advantage over the Lacks. As a cautionary tale, it probably resound among those who are concerned about the scientific community but as someone who does benefited the knowledge from various researches, it made me feel ashamed at the same time.
It does made me think about our own stories like Prof Yap and the story of how his ex-student rip off his notes and publish it under his own name. It does made me think of the things corporate science do to Malaysia particularly on patents such as the fiasco around Tongkat Ali. Depressive as it sound, the scientific laws in Malaysia aren’t quite as extensive such as in the US and there are still various loopholes in our legislations. Even our research universities are still handicapped by limited facilities and grant which made the future of R&D can be quite bleak. It probably would take a century more for us to achieve the international standards but on the bright side of it, we can learn mistakes from the predecessors and stories like Henrietta’s shouldn’t be taken aside and forgotten.
And I am still pissed about Big Bad Wolf Sale putting this book in Fantasy and Science Fiction section with handwritten label saying it was “Fantasy” on it. A real woman who lived and died. Her cancer cells continue living and was subjected to thousands and hundreds of hours worth of experiments so that all of you can be cured by diseases that wasn’t preventable half a century ago. The same woman with her surviving children still struggling years after her death only to find out horrifically that everyone in the world have been profiting from their mother when they could barely afford themselves medical insurance. Just because the title have the word “Immortal” in the title doesn’t mean its fictitious.