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?
RS: While writing, I was very conscious of this being the Lacks family's story, not mine. In fact, deciding to include myself in the book as a character was incredibly difficult. When I came home from reporting trips filled with stories about my time with the Lacks family, my agent, friends and family all had the same reaction: They'd say, You have to put that in the book, because the family's response to you is part of the story—it shows how deeply they've been affected by Henrietta's cells and their legacy. But I resisted for years, saying, "I don't belong in this story—it's the Lacks family's story, not mine."
I was right; it is the Lacks family's story, but without realizing it, I had become a character in that story. I was yet another white person who'd come along wanting something from the family. I was also a reporter who'd impacted Deborah Lacks' life in many direct ways, putting her into situations—like visiting laboratories at [Johns] Hopkins, and the institution where her sister died—that she wouldn't have otherwise been in, sometimes in ways that proved very difficult for her. In the end, I realized it would be dishonest of me to leave myself out of the book. But I held on tight to the idea that this was their story, and I tried to write it accordingly.
The Root: How has Henrietta's family benefited from the book?
RS: I didn't want to be another person who came along and potentially benefitted from the family and their story without doing something in return. So I set up the Henrietta Lacks Foundation. I'm donating a portion of the book's proceeds to the foundation, which is open for anyone else to donate to. My hope is that biotech companies and scientific institutions that have benefited from HeLa cells will contribute to it as well. Among other things, the foundation will provide scholarship funds for descendants of Henrietta Lacks, so they can get the education that Henrietta and her family didn't have access to but desperately wanted.
When I first contacted the Lacks family more than 20 years later, still no one had explained to them what a cell was, or what it meant for Henrietta's cells to be alive in laboratories. Now her children have gone into a lab to see Henrietta's cells; they've heard scientists explain how HeLa cells are used. After the book was published, the Lacks family joined me at several public events to talk about their story. They've been greeted with standing ovations and asked for their autographs, and they've heard many scientists and members of the general public say "Thank you" and "I'm sorry," something they've longed to hear for decades.
The Root: After a total immersion in Henrietta's life, what would you say if you met her?
RS: I've spent much of the last decade wishing I could sit down and talk to Henrietta. The first thing I would say is, "Thank you." Then I would ask how she feels about everything that happened after her death. Henrietta was one of those women who was a mother to anyone who needed her help. She had five children she devoted herself to completely, including a daughter who was epileptic and couldn't hear or speak. Henrietta always had a vat of greens or spaghetti on the stove, and everyone in the neighborhood knew, if you were hungry and low on money, you could stop by Henrietta's any time and she'd feed you.
Her daughter Deborah always said it made perfect sense that Henrietta's cells have done so much for medicine and saved so many lives—she helped people in life, and now she's helping them in death. I have no doubt Henrietta would be upset about how her family was treated, but like her family, I also believe she'd be happy that her cells have helped so many people.
Rebecca Walker is the author of Baby Love: Choosing Motherhood After a Lifetime of Ambivalence.