Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.
Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.
Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance?
I love reading on the lives of others, especially when they have something to teach us. The Immortal Life of Henrietta Lacks offered just that. By the title alone, I assumed this was mostly a biography of Henrietta. I was wrong. Her life, cut short while just a young mother, really is the ground upon which this book is built
There are several layers to this story and the author moves between them thoughtfully. There is the story of how the author came to hear Henrietta's name mentioned and her desire to want to know more about her. There is the story of Henrietta's life. There is the extensive research on medical ethics, the history of medical research and cell culture. Several cases of where doctors conducted experiments on people without their knowledge including those on black people, on women and on those at a Jewish hospital are shared. Then there is the story of Henrietta's descendants, the journey to find and build a relationship with them, the memories they share about their journey and the disrespectful way they were treated by researchers and media. Her daughter Deborah features prominently here.
This was an eye opening read about race, medical ethics, media ethics and the history of medical experimentation without disclosure that I feel is a must read for everyone as it looks at both the legality of the practice as well as the important scientific benefits. Cells from biopsies and medical standard tests are still being collected and stored today without your consent. How do you stand on this?