The Immortal Life of Henrietta Lacks (Rebecca Skloot)
HeLa is a building block of cell science and a cornerstone of modern medical research. Among numerous other very interesting uses, HeLa cells were used in the first space missions to test the effects of space on human cells, they were used in nuclear experiments, and they were (and still are) used to develop important vaccines, chemotherapies, and radiation treatments that have and continue to save millions of human lives. HeLa is widely known in the medical science community as one of the most important tools in the development of modern medicine. The purchase and sale of HeLa cells for the purpose of medical research over time likely numbers somewhere in the billions.
This book goes into painstaking detail about the relevance of HeLa cells in the existence of mankind, but its primary purpose is to shed some light on how HeLa came to be...which went a little something like this:
Once upon a time there was a woman, a wife and mother to several children. She suffered several medical ailments on and off in her life, but one day she became very ill and was diagnosed with cervical cancer. The doctor treated her with radiation, but the cancer spread and in her very early thirties this young woman died. After her death, cells were removed from her body and used in an experiment of cell division. Unlike any other cell in that experiment, this woman's cells kept dividing. And kept dividing. And kept dividing. And even unto this very day, they are still continuing to divide. Because of this unique type of cell division and multiplication, the woman's cells were extremely valuable for a multitude of research purposes. The woman's name was Henrietta Lacks. Likely because it was the 1950's and even more likely because Henrietta Lacks was a black woman, her family was never informed of the cultivation of her cells for research and certainly not informed of their value. Today, Henrietta's family is trapped between an expired statute of limitations on the several infringements committed toward them and an understandable inability to trust anyone in the legal or medical communities after a lifetime of betrayals they have experienced. They have lived 60 years of intense frustration, and no one in the Lacks family has lived happily ever after.
What a sad, sad story. Henrietta Lacks left a legacy that has transformed medical science, yet her own children stated at one point that they were so poor that they couldn't even afford health insurance.
Somehow the author of this book won the trust of the Lacks family and was therefore able to put together this very comprehensive tale of Henrietta's life and background, her medical treatments, and the process of the discovery and subsequent uses of HeLa cells. It is incredibly thorough and in the author's own words was extensively fact-checked.
The thoughts that continued to run through my mind while trudging through the bits of cellular science history were that the real untold story here is that this family has been exploited in ways unimaginable. Their disadvantages due to poverty and race (at that time) made them easy prey for the people who they should have been able to trust: the doctors. What has been done to the Lacks family is positively inexcusable, and why no reparations have been made to Henrietta's descendants is beyond me.
In addition to her cells' contributions to science, the controversy surrounding Henrietta's family's experience has led to a revolution in the way patients are required to be informed and to give consent for their treatments or for bits removed from their bodies. What you and I take for granted in that stack of release, privacy, and consent forms we fill out at the doc's office or for pre-operative processing, Henrietta was never given the opportunity to consider. You can thank Henrietta Lacks for her seemingly ceaseless contributions to science, but you can also thank her for your right today as a patient to be informed and to give consent to procedures that involve your body and what is removed from it. And we can all thank Rebecca Skloot for telling Henrietta's story.
*The author used a portion of her earnings from sale of her book to establish the Henrietta Lacks Foundation, which is a foundation that provides scholarships and grants for descendants of Henrietta Lacks as well as descendants of other research subjects (ex: the Tuskegee experiments). Learn more about that here: http://www.henriettalacksfoundation.org/
For more about the author and Henrietta's story, go to http://rebeccaskloot.com/.