Rebecca Skloot Feels Indebted to Henrietta Lacks
Your book follows a decade-long reporting adventure that traces the story of Henrietta Lacks, the unwitting donor of what became the first human cells to grow indefinitely in a lab, known as HeLa cells. They started a medical revolution and an enormous industry, with damaging consequences for her family. The movie based on all this is just about 95 minutes long. I guess the only way for an audience to truly experience what all that reporting was like would’ve resulted in a really dull movie. You would have had hours of me sitting at a desk with a phone against my head. And that would have been really boring.
But the movie did keep a lot of your relationship with Deborah Lacks, Henrietta’s daughter, who, at first, refused to speak to you. I adamantly did not want to be in the book. But people — my editor, my friends, even Deborah — told me I had to be, because the family’s resistance to me, and Deborah’s fear and her response to me, are part of the story. It shows what they’d been through: There had been other people who’d come along because of the cells, including journalists. I finally realized, Oh, it’s not about me inserting myself into their story; it’s that I become another character in their story.
You and Deborah grew close, but she died before the book was completed. Deborah was so excited for the book to come out. She wanted to go to every school; she wanted to be onstage; she had her dress picked out for “The Oprah Winfrey Show.” It was devastating. She never got to hold the book in her hand. The Lacks family showed up to one of my first events, and I could barely hold myself together. But many members of her family believed that she was there with me, and that was a real gift.
What role do you think fate and faith in science play in the story? We hear a lot about science versus religion, but what I saw over and over was Deborah’s faith keeping her anchored and opening her up to learning about the science. She really believed her mother was brought back to life in these cells to take care of people, like an angel, and that was so rooted in her faith. That let her overcome a lot of her fears, like going to see the cells for the first time.
Do you think that your role as a white person who has profited from this story is analogous to the scientists’ profiting off the HeLa cells? I didn’t want to be another person who benefited from this without doing something in return. So I always told Deborah: I don’t know if I’m ever gonna get this published, but if it happens, I want to set up a charitable foundation to help Henrietta’s descendants and others who have made important contributions to science without their consent, which I did in 2010. But money came up often in the reporting — she really struggled with money, and I also didn’t have any. But even if I had, there’s a code of ethics in journalism that says you can’t pay people for their stories. It’s something journalists wrestle with a lot.
During your reporting, you visited Clover, Va., where Henrietta was raised in the 1920s. The level of poverty you describe in the book doesn’t quite manifest in the film, but that poverty is incredibly formative in both Henrietta’s and Deborah’s stories. That was a part of an education for me, showing up down there and sitting in a house with a man where there were holes that were patched up with newspaper and cardboard. When the book came out, I spent a lot of time traveling in different countries, because it came out in a bunch of various languages. The most common question I got in the United States was: Why hasn’t the Lacks family gotten any money from the cells? But overseas, everyone was like: Wait, they couldn’t get health care?