Chicago-based writer Rebecca Skloot didn’t know what she was getting herself into when she began researching the life of Henrietta Lacks, a poor, young black woman from Virginia. After Lacks died of cervical cancer in 1951, scientists cut off cells from her tumor and turned them into an immortal cell line that has been used in scientific research for decades. Her cells (called HeLa) helped develop a polio vaccine, cloning, and more. But while Lacks’ cells are vital to modern science, her children don’t have health insurance.
In her 2010 book The Immortal Life Of Henrietta Lacks, Skloot explores the importance of HeLa cells, the troubles that face the Lacks family, and the controversial world of tissue culture. Skloot, who writes for The New York Times and Discover, swung by the Harold Washington Library Center earlier this year. But before that, she told The A.V. Club about why she ditched New York for Chicago, why Americans are afraid of science, and the crazy things you can find while digging through archives.
The A.V. Club: Your bio for the 2004 New York Times article “Two Americas, Two Restaurants, One Town” says The Immortal Life Of Henrietta Lacks would be published in 2006. What happened to add four years to the publication date?
Rebecca Skloot: [Laughs.] My friends have been teasing me about this for years. If you go back to the first article I wrote after I started the book, in 2000, my bio has a publication date of 2002. You can trace the drama of my book-publishing story through my bios.
Some of the delay has to do with the book itself, since when I started working on it I had no idea what I was getting myself into. I thought I was just writing about Henrietta; I had no idea her family had this unbelievable story.
But by the time the book came out, it was on its fifth editor and third publishing house. My first contract was with W.H. Freeman, and they ended up folding. So it went to the parent company, and the editor wanted me to take the family out of the book and just write about the cells. We had a battle over that, and I took the book away from them and sold it again. It’s not uncommon to have a few editors, but three publishing houses is excessive.
AVC: You spent a lot of time with Henrietta’s children to learn about their mother and their quest to learn about the cells. What other research did you do?
RS: Much of my research for the science part was reading journal articles and interviewing scientists. Johns Hopkins has a George Gey [the scientist who bred the HeLa cell line] archive. They have 12 to 15 boxes of stuff in this room. There were thousands of letters that weren’t indexed, so I sat down and read them all. Then there was this paraffined rat from the ’50s with tumors all over it. I pulled it out, saying, “This is great!” But the people in the library were like, “Eww!”
AVC: Writing this book took more than a decade, and some members of the Lacks family were hesitant to help. Did you ever think it wasn’t going to happen?
RS: No, I never thought I wouldn’t do it. In the first conversation I had with Deborah, Henrietta’s daughter, it was obvious she wanted the book to happen, but she was scared. She was very excited, then hung up on me and didn’t talk to me for a year. In that call she gave me the main bits of the story—she thought there was a murder, someone stole her mother’s medical records, DNA samples were taken from her—and it was enough for me to say, “Something big happened here, and I have to find out why she’s afraid to talk to me.”
AVC: Part of the reason the Lacks family was afraid to talk to you was that they genuinely did not understand how HeLa cells were being used. What are some ways we can improve science literacy in the U.S.?
RS: Getting more science stories out there and getting kids to start reading them. Yesterday I just finished this marathon stretch of 15-hour days rewriting the book for kids. It’s coming out for 9- to 12-year-olds with diagrams and sidebars. It’s important to get the story across to kids to inspire them and teach them, and get them thinking about the impact scientific illiteracy has on a family. I hear from kids in high school or college that the story has gotten them interested in studying science. I also talk to scientists about how to communicate with the general public, which is the whole other side.
AVC: How can we make science writing more accessible?
RS: The general public is pretty intimidated by science since it sounds like homework. It’s not fun. The biggest reason science isn’t accessible is that it’s boring. Not inherently boring, but people want stories. We’re a storytelling species. This is a book about a family, losing a mother, scientists doing research. There are characters. It takes work to read science, but when there’s a story you don’t care. It’s like taking medicine with something that tastes good. Storytelling shows people why it’s relevant to them—everyone out there has benefited from the research done with HeLa cells.
AVC: The cells were taken from Lacks without her permission, and the subsequent research has meant that scientists and research firms have benefited scientifically and financially. In the more than 50 years that have passed since then, how has tissue culture changed?
RS: Some things have changed. Scientists can’t go to families and just take DNA samples, like they did with the Lacks family. Tissue culture research happens all the time, and people don’t realize it. If you have a blood test or a biopsy and your name is removed, it doesn’t require consent. There’s no disclosure of financial interests, so a lot hasn’t changed. I spend a lot of time talking to people about this, and it’s clear they understand how important the research is, but they’re upset when they find out their tissues were used after the fact. We’re heading to the point where we’ll have to have disclosure that tissues are being saved.
AVC: HBO is turning your book into a movie. Has it started filming?
RS: The screenwriter, Peter Landesman, is still working on the script, and we’re hoping to go into production by the fall. He just did a miniseries about JFK [Reclaiming History: The Assassination Of President John F. Kennedy]. I’m consulting on it, and so is the Lacks family. Most of their story is in the book, but you’ll see me as a character in the movie. In the book I worked only to include myself where it was relevant to the family’s story. You don’t learn anything about me as a character in the book.
AVC: What was the most significant thing you took away from the whole project?
RS: The importance of following your gut. I had this feeling early on that this was an important story to tell. And standing up for my story at moments when it was falling apart. I was a twentysomething writer who had never published a book before, and I said, “No, I’m not going to write a book in that way. I will get out of the contract to do it the way it needs to be done.” I had a stack of rejection letters from publishers who said, “This is an interesting character in history, but not a lot of people will want to read it. It doesn’t have wide-market appeal.” But I kept going.
AVC: You’ve said you read fiction to help you write non-fiction. Which fiction works are particularly influential?
RS: I knew I wanted to write a book with a structure that jumps around in time. I felt if you learn the story of the cells as you’re learning the story of the family, they would both take on different weight. So I went to my local bookstore and told them I wanted to read any book with multiple time periods, multiple characters, that jumps around in time. The first was Fried Green Tomatoes At The Whistle Stop Café, and I also read Michael Cunningham’s books. I wanted my book to read like a novel, but be true.
AVC: You recently moved to Chicago. What brought you here?
RS: My boyfriend is a theater actor and director. He’s at Northwestern in the MFA [Master Of Fine Arts] program. And I couldn’t do New York anymore. I lived there for six years, but I had to leave all the time; it was too much, fast-paced, crazy. It’s a really hard place to live. But I’m also a city person, and Chicago has everything you want in a city—parks, amazing food, but it’s also quiet. It’s a very humane city to live in. I was born in Springfield, Illinois and lived there until I was 10, then moved to the West Coast. Moving here is like coming back, since I have family and friends I knew from when I was growing up.
AVC: Is Chicago good at supporting writers?
RS: Chicago is amazing in its support of the arts. I’ve never been in a place where the public supports theater as much as they do here. Chicago embraces writers and artists of all kinds in a way you don’t always see. And I’ve been writing book reviews for the Tribune for 15 years. It’s a great writing city.
AVC: Do you have any favorite things to do here?
RS: I’m an animal person and I have dogs, so I spend a lot of time at the dog beach. What you can do outdoors with animals here is so great. I’m big into food, and I’m exploring restaurants. I also love coffee. I grew up in Portland around amazing coffee roasters, and I’m an Intelligentsia fan. So my time is spent with my dogs or consuming things.
AVC: You’ve been included in the Best Food Writing. Do you ever want to do more of that?
RS: I would love to do more of it. I haven’t done anything not related to the book in a while, but I will again.
AVC: What are you working on now?
RS: Now that I’ve finished writing the edition for kids, I can start my next book. It’s so early in the process that it’s hard to explain, but it goes back to the world of animals that I’ve always been interested in. It’s about animals and humans and ethics. It’s similar in some ways to the Lacks book.
AVC: You also recently started the Henrietta Lacks Foundation to financially support Lacks’ descendants with tuition or health care bills. Have any science research firms that have benefited from HeLa donated yet?
RS: Nope. I’ve reached out to some, but none have donated.