It all began with this photo and a high school Chemistry teacher mentioning once to Rebecca Skloot's class about the first immortal cells grown in culture...Hela cells. Hela...the first 2 letters represent the first name and the last 2 letters represent the last name. For years, she was known only as Hela, then as Helen Lane (as a newspaper columnist incorrectly reported), then eventually as Henrietta Lacks. But the genius in Skloot's book is not only her coverage of Henrietta's 31 short years on this earth, but also the racial component of how her cells were obtained and the ethical dilemma surrounding the use of cells for scientific purposes such as cloning.
Skloot does a magnificent job of giving a brief history of Henrietta and the Lacks clan (for they truly are a clan since Henrietta had 5 children before she passed away of cervical cancer at the age of 31). Interwoven with the story of the Lacks Family is a narrative about the racial divide in the 1950's, as well as scientific progress regarding the growth of cells for research. Henrietta, her husband, and 4 children had settled in a tobacco farming community in southern Virginia when she first noticed spotting in her underwear and felt a lump at her cervix. She went on to have one more child before having the lump tested. For the black and uninsured communities in the 1950's, the only place to go was Johns Hopkins University. She made an appointment at the "colored ward" to have tests run. The result was a diagnosis of cervical cancer and a treatment of radiation. Not only did Henrietta have skin color and limited scientific advancement going against her, she also (come to find out) had "super" multiplying cells. Henrietta only lived 8 more months, despite aggressive treatment.
Since I am neither black nor was I alive during segregation, reading (and learning) about the treatment of the black community by the medical professionals was both revealing and revolting. They often received sub-par care and had to travel great distances just to get that. Also, there are some stories of Johns Hopkins' physicians kidnapping black citizens right off the streets of Baltimore so they could be used for experiments. When one of the Lacks men recounted this rumor to Skloot, she dismissed it, but later found some evidence that apparently supports his claim. So, in discovering that Henrietta's physician scooped some of her tissue from her tumor to be used for research without telling, much less asking for permission from, her family, no one was particularly surprised.
And thus, the Hela cells were born. The scientific community had been trying to grow cells outside the body, in petri dishes, for years. But eventually, the cells would cease to multiply and die. Even a scientist who proclaimed to have accomplished the feat of growing cells would later reveal that his original batch had died off and what he was sending out were replacement cells. So, when Henrietta's slice of tumor was cut up and incubated, resulting in cells that doubled in number everyday, it sent everyone into a frenzy. A massive and industrial "growing" facility was set up at Tuskegee Institute (which gave black scientists the chance to research, grow, and participate in such a scientific revolution), and once the shipping method was perfected, they were shipped all over the world for about $200 per vial.
Henrietta's cells have been to space (to see if human tissue could survive zero gravity), used in AIDS research, helped create a polio vaccine, were used to develop the HPV vaccine, used to study the effects of radiation and toxic substances, used to study gene-mapping, given rise to the study of virology, used to determine the genetic link for Down's Syndrome and helped create the process of amniocentesis, helped develop a process for IVF, established a way to identify blood type and used in many, many, many more ways. The great irony is that scientists have become filthy rich off of both the distribution of Henrietta's unusually hardy cells and the scientific advancements for which they've paved the way, and yet...Henrietta's 4 children are still medically uninsured. They can barely afford the pills and shots that their aging bodies require. When they first began to realize the importance of their mothers' cells to science, they told their story expecting something in return. What they got was used, abused, and lied to. Enter Rebecca Skloot.
Skloot should be praised for her patience, sympathy, understanding, and persistence while trying to get the story from the Lacks children. They held her at arm's length for over a year before they finally agreed to meet, one-by-one, to share their recollections of their mother and their experiences with the scientists and reporters (which often ended badly and with the Lacks children left holding the shortest straw). Henrietta's only surviving daughter, Deborah, (her youngest had passed away at a "colored" mental hospital, where it was discovered later that patients were used regularly as test subjects for inhumane experiments) made Skloot work for her story, over and over again. She had regular panic attacks about Skloot's research and demanded to know who she was working for and how much she was getting paid for the story (Skloot financed everything on personal credit cards until the book was published). She had come-aparts and rashes of hives and refused to ride in a car with Skloot for fear of being abducted. But in the end, Skloot wrote her story and the world is a better place for it.
What I have failed to do is even touch on the depth and breadth of this story and all of the characters in it, but I would prefer you start reading the book, rather than continue to read this post. The 4 surviving Lacks children are fascinating and completely relatable. At the end of the day, all they wanted was to know their mother (especially Deborah, who was just an infant when her mother died) and to have the scientific use of their mother's cells explained in a way that wasn't scary or alien. Skloot has managed to do both, while providing us with an easy-to-understand background on cell growth and use in research, and contemplating the moral implications of continued cell research for the purpose of genetics and cloning.
I would recommend this book to every doctor, nurse, midwife, lab tech, EMT, biologist, chemist and medically-minded individual who has 5 days to read a captivating true story. But I would also recommend it to anyone who would like to learn more about a woman and her incredible, indestructible cells, which have affected every single one of us in some way. I think about the fact that I am not crippled by polio and how my nieces may never contract HPV and how I can tell a doctor exactly what my blood type is and I give a fist bump to Henrietta chillaxin' in Heaven. She is the reason for all of this. How can we not want to read about her, even if it's just to honor her contribution to our world?