Print edition: 
Sixty years ago, the word “bioethics” didn’t exist. The concept as we now know it didn’t either: Medical research was routinely conducted on people without their knowledge, or without their informed consent. Often, poor African-Americans were research subjects (see: Tuskegee syphilis study), trading “participation” for medical treatment.
Sixty years ago, a woman named Henrietta Lacks was treated for cervical cancer at Johns Hopkins Hospital. Poor and black, she didn’t know how bad her cancer was, and she didn’t know that her cells were taken for research. She died too soon to know that her cells grew into a thriving cell line called HeLa, shipped all over the world for research. Lacks’ family didn’t know, either — and didn’t know until much later that her cells are still alive today.
More than 20 years ago, Rebecca Skloot first became aware of the HeLa cell line, in a biology class. And more than 10 years ago, Skloot began researching the HeLa cell line and the woman behind it. The final product, “The Immortal Life of Henrietta Lacks,” is a gripping combination of biography, science and history.
The origin of the cell line is presented clearly and intricately: how the cells were initially taken and grown, who the researchers involved with it were, and what happened once they realized that this line was different.
Good science writing isn’t easy, but Skloot makes it appear so. Her explanations are never tedious and the significance of HeLa is never lost among details. She talked to many of the people originally involved with HeLa, and also people of the next generation whose research benefited immensely from HeLa. And she seamlessly slips in perspective on medical ethics of the time and how the concept has evolved and been codified since 1951. She also doesn’t ignore the racial and class elements that are interwoven with this story; rather, she calls out the worst offenses, puts them all in context and discusses them in an evenhanded manner.
That in itself would have made a fascinating story. But Skloot takes it a step further, making the story personal, bringing a name and a face to the woman behind HeLa.
She tracked down Henrietta’s children, other relatives and friends, many of whom were initially distrustful of yet another white person coming around asking questions. For people had come around before, wanting what the family saw as more pieces of their wife and mother — looking at Henrietta Lacks as a specimen, not a person.
Henrietta’s daughter Deborah finally allowed Skloot intimate access to the family, providing her with details about who Henrietta Lacks was, what she liked to do, how she lived.
Skloot thoughtfully details the lives of Henrietta’s children — the good and the not-so-good — their memories of their mother and especially their mixed feelings about their mother’s legacy. HeLa has been used in polio vaccine research, AIDS research and cancer research, and is still used today. Millions of dollars have changed hands over these cells, yet Henrietta’s own family never saw a penny, and rarely had the means to pay for their own health care.
Once they discover the truth about their mother, they are torn between wanting some compensation for what she gave and just wanting the world to know who she was.
She was Henrietta Lacks. This book tells her story well, and an astonishing story it is.
