The Immortal Life of Henrietta Lacks

By Deputy Editor Thea Lim

A post at the Pursuit of Harpyness alerted us to a new book on race and bioethics: Rebecca Skloot’s The Immortal Life of Henrietta Lacks.  The following is from Skloot’s website:

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 effects of the atom bomb; 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…

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?

The Pursuit of Harpyness elaborates on this last point, saying:

But what struck me most was the fact that in a country with a more functional social safety net – universal health care, social assistance, half-decent public schools – the disparities between the Lackses’s situation, and the incredible wealth generated by the medical knowledge it occasioned, wouldn’t be so stark. They would have actively benefited from this research just like everyone else.

Learn more about the book at Skloot’s website.