The Root Interview: Rebecca Skloot

The author of The Immortal Life of Henrietta Lacks was drawn to the story by the history of unethical medical research on blacks and Jews.


The Root: What drew you to this work, to Henrietta Lacks?

Rebecca Skloot: I first learned about Henrietta when I was 16. My biology teacher mentioned "HeLa" cells, saying they were one of the most important tools in medicine, then almost as an aside, she said "They came from a woman named Henrietta Lacks, and she was black." That was the moment I became obsessed with Henrietta. I asked whether her family knew about the cells and what her race had to do with them being alive, but my teacher said no one knew anything else about her.

I realize now that my questions weren't obvious ones for a 16-year-old to ask, but I had just learned that members of my family had been killed in concentration camps during the Holocaust. I'd started reading books about Nazis and learned about the horrific research they'd conducted on Jewish prisoners without their knowledge, and those books led me to read stories about racial cleansing efforts in the United States, and the Tuskegee syphilis study and other unethical research conducted on African Americans.

The Root: How does her story speak to the contemporary American landscape--why is the story of her cells important to tell at this particular moment?

RS: A lot of the ethical questions raised by Henrietta's story still haven't been addressed today: Should people have a right to control what's done with their tissues once they're removed from their bodies? And who, if anyone, should profit from those tissues? Henrietta's story is unusual in that her identity was eventually attached to her cells, so we know who she was. But there are human beings behind each of the billions of samples currently stored in tissue banks and research labs around the world. The majority of Americans have tissues on file being used in research somewhere, and most don't realize it.

The Root: Do you think her story is of particular interest or importance to African Americans? To Americans concerned with health care reform?

RS: No question: This is the story of how cells taken from a black woman without her knowledge became one of the most important advances in medicine and launched a multi-billion-dollar industry, with drastic consequences for her family. It's inextricably linked to the troubling history of research conducted on African Americans without their consent.

But for decades, the story of Henrietta Lacks and the HeLa cells has been held up as "another Tuskegee," the story of a racist white scientist who realized a black woman's cells were valuable, stole them from her, then got rich selling them--perhaps even withholding treatment for her cancer in order to be sure the cells would grow. None of that is true.

This story is just as much about issues of class and economic injustice. Many people have asked me, "Would those cells have been taken from her if she'd been white?" The answer is yes, if she'd been white and poor.

The Root: White authors have often approached and/or appropriated black stories and culture. How did you reconcile this tendency with your own intentions?