Let’s take a moment and think about her name. Henrietta. Lacks. Our names serve as an identifying marker–the gateway into our personalities, our history, our lives. Henrietta had two names, the one that she died with, and HeLa, the name that made her immortal.
For the RPSNE book club this month we decided to read The Immortal Life of Henrietta Lacks, a non-fiction book that tells the story of the life, death–and life of a poor African American woman from Baltimore, Maryland. In short, in the 1950’s Henrietta Lacks died of cervical cancer at Johns Hopkins University. During treatment and upon her death, her cells were taken for research–and were found to be the first cells grown in culture–cells that to this day could encircle the Earth hundreds, upon hundreds, of times. As the book states, her death allowed for scientists to develop the polio vaccine, and investigate the causes for cancer, major virus’, and the effect of an atom bomb on the human cellular structure.
But that is the story of HeLa–not Henrietta Lacks. Her story is one of growing up in rural Virginia, of going to school, and almost dropping out after becoming pregnant–if not for her sister-in-law, and of raising five kids in a segregated Baltimore city. Her story is also the story of her death, and the very real experiences of someone dying of cancer. And it is the story of her five children, of her youngest daughter Deborah who never really knew her mother–and how the knowledge of HeLa cells changed her life.
History is often told along a distinct timeline. We have a birth, we have a death–and the story is best told in chronological order.
Henrietta’s story (soon to be a TV movie by Alan Ball, Oprah and HBO) is a layered story, and Rebecca Skloot does an incredible job of weaving the scientific history/the history of the HeLa cells, the Lacks’ family history, and Henrietta’s own personal history.
I don’t want to spoil the book for those interested in reading it, but I did want to point out a few details about this very public history. First, methodology. Rebecca Skloot is nothing if not meticulous in her writing. She is very clear in laying out the various controversies in the field, pulling together public perception on cell culture with current discussions on privacy and the human genome project. She makes it easy for someone who is not a scientist to understand the role that HeLa played in scientific discoveries for the last sixty years.
Second, narrative. I found that this story was as much of a memoir on Skloot’s perseverance and connection with the Lacks’ family….and the development of trust. In putting the pieces together Skloot is honest, fair, and open in describing the faults and flaws no one is described in a vacuum or prettied up for the sake of the publication. Taking place against the the backdrop of The Civil Rights movement, Nixon’s War on Cancer, 9/11 she weaves together scientific discourse, american history, the Lacks’ history, and her personal history all together to create a distinct, interdisciplinary image that you can’t help but relate to and understand.
Third, implications. Many history books of a popular bent tell a story rooted only in the past. They look back and say, “hey, isn’t it nice that things aren’t that bad anymore?” Not so with this book–which really emphasizes the new frontier for scientific (and ultimately our own) history. What will Henrietta’s cells do next? What diseases will HeLa help to cure? A few year’s back when the new federal medical privacy laws went into effect (HIPAA, in 1996) I didn’t think anything of it–but I think that this book has helped me to become more aware and educated.
Of course the strength of this narrative is that an ordinary woman unknowingly and without giving permission, has made an impact on the world. The fact that none of us knew about her until recently does not matter. Without Henrietta Lacks our lives would not be the same.
The Immmortal Life of Henrietta Lacks, by Rebecca Skloot
Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multimillion-dollar industry. More than twenty years later, her children found out. Their lives would never be the same. Learn more here. You can also learn more about Henrietta Lacks through NPR’s Radio Lab segment here.