the immortal life of henrietta lacks

The Immortal Life of Henrietta Lacks
by Rebecca Skloot

Genre: Biography, Science

Length: 370 Pages

Released: February 2, 2010

Blurb via GoodReads:

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.

Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.

Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia — a land of wooden slave quarters, faith healings, and voodoo — to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.

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, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance?

Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

Henrietta Lacks was one of the unsung heroes of medical science. Rebecca Skloot sought to change that with her book by bringing her name to light.

The format was one of this book’s biggest strengths. The Immortal Life of Henrietta Lacks was as much about the author’s research process and bonding with Henrietta’s family as it was about the information she uncovered in the process. Consequently, it creates an overall impression of being on that journey of discovery along with Skloot and a sense of emotional investment in the people involved, especially Deborah, Henrietta’s daughter.

The book is imbued with a sense of respect for the family. Medical scientists and society at large have benefited immensely from research which depended on Henrietta’s cells, and a great deal of financial gain has come from it over the years, profits which were not passed on to her family. Countless medical advances came about because of cells that were taken for research purposes without Henrietta’s consent when she sought treatment for her cancer. Deborah Lacks was deeply troubled by the unwillingness of any researchers to help the family understand the nature of the research involving their mother, as well as the lack of recognition for Henrietta herself, who remained anonymous for so many years.

Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus—and at the very same time—that state officials were conducting the infamous Tuskegee syphilis studies.

The Immortal Life of Henrietta Lacks is a story about the Lacks family, racism, medical science, and, just as importantly, about informed consent. While medical tissue research is undoubtedly a net positive for society as a whole, Skloot brings up troubling issues regarding informed consent and the law’s lack of regard for whether patients may wish to participate in this research. The final chapter of the book explores this issue in a nuanced and thoughtful manner. This was an informative and thought-provoking read.