Rebecca Skloot and her book ‘The Immortal Life of Henrietta Lacks’

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Rebecca Skloot devoted 10 years to researching the story and legacy of Henrietta Lacks, a woman who died of cancer in 1951. Cells taken from Lacks during a routine examination became the HeLa cell line, the first -- and for a long time only -- human cells that could stay alive in a lab. They’ve been involved in thousands of studies and major scientific innovations, including curing polio. In today’s paper, we look at what Skloot learned about Lacks and her family and what it was like bringing her book, ‘The Immortal Life of Henrietta Lacks,’ to shelves.

I interviewed Skloot over a few days by phone, and she’s got a lot to say. Here are some of her answers to my questions, in her own words.

Carolyn Kellogg: So you were in high school when you first heard the name Henrietta Lacks. What was going on with you then?

Rebecca Skloot: My famously sick father, he’s written a lot about living with brain damage; that happened when I was 16. All this stuff happened at once. I was doing intense school stuff, dealing with my father being sick, and he was very sick. He was completely invalid -- we had a recliner in the living room where he basically lived; he couldn’t walk upstairs. He was hypersensitive to stimulus, so he couldn’t really have lights on, there could be no smells. Two floors up, if I had a friend over and we laughed, that would really be painful for him. So it was like the house felt like death. We didn’t know what was wrong with him. ... Not long before that, he was a marathon runner -- he was my superdad!

He ended up enrolling in a drug study, where he was essentially a guinea pig. ... He couldn’t drive, and I’d just gotten my license. I would drive him to the hospital for these experimental infusions four times a week and sit there with him while he was getting treated. There ended up being a lot of ethical questions about the study -- they had promised that if the drug seemed to help they would give it to everyone. It clearly wasn’t helping my dad, but definitely some people were getting better.

I was in the midst of learning firsthand the hope of science -- we were putting everything into this study and thinking, OK, maybe this is going fix him, and he’ll go back to being my dad. At the same time, we were really mad, because people were getting better and he wasn’t, and they weren’t really communicating with us. I was in the midst of learning about the highs and the lows of it.

I think that’s why I latched onto the story -- my teacher said there’s this woman named Henrietta Lacks -- my first question was, does she have any kids? What do her kids think of this? I think that was because at that very moment I was dealing with my father being used in research and trying to grapple with that. And spending my days watching him get poked with needles, he was bruised from all the treatments -- a lot of things coming together all at once grabbed my attention.

CK: You write about repeatedly calling Henrietta’s daughter Deborah and leaving messages on her answering machine. Did you actually call every couple of weeks for months on end?

RS: Oh yeah.

CK: Did you ever think, maybe, I should stop annoying these people?

RS: No! Now I look back at it ... I have no idea how I would handle it differently. I might do exactly the same thing now. I probably would. But, you know -- part of it was that I knew from that one phone call with her that she really wanted that information. ... Later, she and I would joke about it -- she would just sit there and listen to those stories -- she really wanted those stories, but she was scared to pick up the phone. I didn’t feel like I was harassing her, I felt like I was slowly figuring out the story and giving her pieces of it as I went along.

CK: Your interactions with the Lacks family are a major part of the book. You and Deborah became close.

RS: Once I won their trust, Deborah said, joking, Henrietta chose me, from an early age. She had been guiding my life, working me like a puppet: Go over here and study science, go over here and study writing. ... The HeLa cells have almost a mystical quality to them, that she’s sort of out there, orchestrating all this stuff. For the Lacks family, the first publisher folding was because Henrietta didn’t like that publisher. ... It became part of the story, for the Lacks. In some ways, it started to feel like that.

CK: In the book’s opening chapter, you describe Henrietta Lacks’ childhood growing up poor on a tobacco farm vividly and intimately. How much research did that take?

RS: I think I did more research on that one chapter! Months and months and months and months talking to people, going through archives. When I first started working on the book, there were several of her cousins who she grew up with who were still alive. These guys were in their 80s and 90s; getting them to remember their childhood was this unbelievable adventure. I was so young -- I didn’t know what I was doing in terms of interviewing techniques. ... There was this wonderful high school librarian there who had been saving all this great documentation for decades -- she’d been saving peoples letters from the town -- a lot of the narrative details came from [her files]. Henrietta’s funeral -- that one scene -- I interviewed probably a dozen people. I would talk to all these people, and the same details would come up story after story. Sometimes it would only be three people, sometimes only two, but I always made sure that there was this kind of overlap of stories, so I could feel like I was on sound factual footing.

I felt like, as I was doing this, history was kind of vanishing. I felt like I was scrambling along behind it. I was sort of trying my best to keep up as everything was going away. There were two different cases where people who knew Henrietta or knew George Gey, the scientist [whose lab grew her cells], died right before I was supposed to interview them, which was just devastating. There were a few other cases, like her cousins, who died immediately after I interviewed them, and I thought I got this incredible piece of history, right before it went away. And the burden of that as a writer was pretty intense for me. I felt such a duty to tell the story and tell it well and do justice to all sides of the story.

-- Carolyn Kellogg