The Immortal Life of Henrietta Lacks is a book most journalists wish they could write. It is an amazing accomplishment that took years of sacrifice, gumption, credit-card debt, curiosity and the taking of the slightest hint of a story and molding it into one fantastic book. Call it the Incredible Journey of Author Rebecca Skloot.
Fortunately for Chicagoans, you will have a chance to hear Skloot in two upcoming events, and possibly more, as the young writer has moved to Chicago, because her boyfriend is returning to theatrical directing school in the area.
Skloot is participating in a public discussion about science writing with E.O. Wilson as part of the Chicago Humanities Festival Saturday, Nov. 13, 2-3:30 p.m. at Northwestern University School of Law, Thorne Auditorium, 375 E. Chicago. ( See www.chicagohumanities.org . ) This will be a discussion about science writing.
She will be giving an in-depth discussion about her book at a lecture, booksigning and dinner with special guests Bill Kurtis and John Garcia Tuesday, Nov. 16. The event is presented by The Chicago Council on Science and Technology and Children's Memorial Research Center and will also be at Thorne Auditorium at Northwestern. A members-only cocktail reception will be held at 5 p.m., followed by a 6 p.m. presentation and Q & A. See www.c2st.org, call 312-567-5829 or e-mail crhodes@c2st.org .
The Immortal Life of Henrietta Lacks reads like a sci-fi/mystery story, but it's all true. It tells the extraordinary tale of one African-American woman, Henrietta Lacks, and how her cells became the basis for a revolution in medicine. Lacks died young of an aggressive form of cancer, but her cells lived on, known to the world as HeLa, the first "immortal" human cells. These cells have helped in developing the polio vaccine; helped in cancer research; assisted in research on the atom bomb's effects; were part of key studies on in vitro fertilization, cloning and gene mapping; and they have even been to the moon.
Yet Lacks' cells were taken without her consent, and her family was unaware a "part of her" was still alive decades after her death. Little was explained to them, and they never benefited in any way from the contributions their relative's cells made to medicine. In fact, many of her family members never had their own proper healthcare.
Rebecca Skloot came to the story as any curious person would: She heard about these remarkable cells, and decided to dig further. She wanted to know why this one woman was unique, and if her background was relevant. What Skloot uncovered over 10 years of research was that while there were tragic circumstances that lead to Lacks' situation in life, and the exploitation of her cells, there were no actual initial medical violations, as what happened was common practice in the 1950s, especially to poor Black people in need of medical care.
But the story behind the writing of this book is just as interesting as the HeLa cells themselves. Skloot did not have a book deal in place, and no one was underwriting her expenses, as she traveled the country finding Lacks' surviving children and other relatives. They had been lied to and mislead about Henrietta, so it took some time for Skloot to build their trust. In fact, Henrietta's daughter, Deborah, often traveled with Skloot on research treks and interviews, wanting to know more about the science, and religion, related to the cells of her mother.
The story is so compelling that Oprah Winfrey and Alan Ball will be producing a film version for HBO.
What I found most amazing about Skloot's journey was how it ended. She was not going to be in the same place as previous people who "took" from the Lacks family. She has set up a scholarship fund for Lacks' relatives, to send them to school. So far, the foundation has been able to cover tuition and books for five of Henrietta Lacks' descendents. See more details at www.rebeccaskloot.com .
"When it came to money, I didn't want to be another person who came along and potentially benefited from the family and their story without doing something in return," Skloot writes on her Web site. "So I set up The Henrietta Lacks Foundation. I'm donating a portion of the book's proceeds to the foundation ( which will also receive money from the creation of the movie, which Lacks family members will be paid consultants on ) . The foundation is open for anyone else to donate to."
Since first reading the book earlier this year, I have been telling everyone I know about The Immortal Life of Henrietta Lacks. It is my favorite book of the year, and among my top 10 of all time. Not just because, as a journalist, I admire the work, but because this book represents and discusses so many of the issues facing us still today, including medical ethics, access to healthcare, racism in scientific research and much more.
Skloot was kind enough to spend time with Windy City Times discussing her research and journey with Henrietta Lacks. She's currently working adapting the story for a children's book.
Tracy Baim: Please tell me how you were able to do this book on your own for 10 years, and was it something you were consistently working on?
Rebecca Skloot: Logistically, during the first several years, I did it on student loans, credit cards, and I went into a lot of debt. It was a pretty constant thing. I was also building my career as a writer—trying to break into national publications. I funded the book, sometimes by doing other stories in Baltimore and Virginia—I would then spend all day working on other stories, then at nights and weekends and extra days I would spend time with the Lacks family. I was moonlighting.
TB: How soon did you get a book deal?
Rebecca Skloot: In the end, the publisher and editor who worked on the final version, was the third publishing house and fifth editor. I went through a lot of things with publishing houses. I did write a book proposal and sold it in 2001; and that itty bitty advance didn't touch a fraction of the debt. I was a grad student, it was a reputable publishing house and I had been rejected by a lot of publishers at that point. I didn't have the credentials. That publisher went out of business, and the book was sucked into the parent company, and the editor wanted to take the Lacks family out of the book, which started a bit of a battle, because I wasn't going to leave them out of the story. That lasted a year and a half. When I finally got it away from them, I went out with the same book proposal, and sold it again. In between those two times, I had been working on my freelance bio so much and I was a more experienced writer the second time. But nothing had changed about the proposal, just that I was more professionally established.
I went with Crown, in 2004, and I went through a few editors there as well. But it all worked out for the best—I ended up with an incredible editor at Crown. Deborah and her family would follow this [ process ] , and she believed Henrietta was guiding me to the perfect editor.
TB: How did you handle the complicated scientific aspects of this story?
Rebecca Skloot: I have an undergraduate degree in biology; I had a basic knowledge and textbooks. I also spent years, and paid my way through school and grad school, as a veterinary technician, so I was really immersed in science and medicine. I still had to do a lot of research, but I had enough of a foundation, so the research was pretty natural for me. I interviewed a lot of experts to get a sense, what was the most important thing? What was the most important contribution these cells made?
TB: In the book, Henrietta's daughter, Deborah, is concerned about the cells from a religious perspective. Was her mother's soul "in" the cells still, feeling pain or somehow alive? How did you grapple with those issues?
Rebecca Skloot: I was very worried that my vastly different beliefs and lack of religious background was going to be a problem for the Lacks family. I was not raised in a religious family. I came at this as a scientist—I saw cells as cells, not an extension of Henrietta's soul as her family did. But that wasn't a problem at all. I worked very hard to learn where her family was coming from, to understand their beliefs. In the end, the experience really transformed my understanding of faith and the important role it can play in people's lives—I hadn't been exposed to that. It helped teach me how healthy faith can be for people.
Did they convert me? No. Did they change my understanding of religion as a whole and the role religion can play in science? Yes. People talk science vs. religion, as always being at odds with each other. I saw how religion and faith helped the family open to the science—they saw her as an angel who came back and takes care of people. The Bible talks about immortal life being granted to followers and says you never know what form that life will take. Some members of the Lacks family believed Henrietta had been brought back to life as an angel in these cells, to take care of people. That allowed them to feel good about the cells, to view them as something positive, and also be open to learning about the science behind them.
On the book tour, I talk to thousands of people weekly. One question frequently asked is "Were you able to straighten the family out about her soul being in the cells?" I respond to that by saying that they definitely learned what a cell is. But the question of whether her soul is alive in there is really a personal one for people—it depends on how you define life and soul, and what it means to have your DNA living on in a cell. There is no definitive answer for some of those things—it depends on personal belief, which is part of the beauty of the story.
TB: This country has a horrific past of using poor people, and particularly African-Americans, in research, such as the Tuskegee experiment. Your book details much of this as relevant to the Lacks story. Can you see why some African-Americans believe AIDS is also part of this scientific conspiracy?
Rebecca Skloot: You can't separate AIDS from the long history of African-Americans being used without their consent. There is so much mistrust between African-Americans and science, with things happening behind their backs. Historically this has happened. Scientists are trying so hard to get beyond that. There are diversity outreach people whose jobs are to move beyond that so that African-Americans are not under-represented in studies, and because they need to see doctors for their health.
But there are a lot of people who don't know where that fear comes from. … You can't separate race out from the story. She was Black and had to go to that hospital [ Johns Hopkins ] , because if you were Black and poor you ended up in public wards. I wanted to show where race was and was not involved. To straighten out the myths, and show where that mistrust comes from. Why is it Black people believe there is a government plot? Because these things have happened.
It is interesting to me that I hear from scientists that understanding this story helps them understand where this mistrust is coming from. At one reading, a woman stood up, an AIDS researcher, and she said she spent a lot of her time trying to get African-Americans to participate in a study. She said, 'For years I have been hearing them say I was going to inject them with AIDS. I thought they were crazy, this conspiracy theory, how could they possible think that.' She read the book, and saw it was based on fact. She said this has allowed her to go to patients and say 'I know where you are coming from,' to help start bridging that gap by knowing the full story.
I talk about where that mistrust comes from, for everybody to get beyond it. For African-Americans and the scientists.
TB: The book notes that Henrietta Lacks did receive the standard of care for her time, and the scientists did not appear to violate any common practices. But in the 1970s, her medical records were released without her family's consent. Was that common or a violation?
Rebecca Skloot: People often focus on the HeLa cells as the big ethical issue, taken without asking, etc. That's the most ethnically uncomplicated part of story. Informed consent didn't exist then. It was more complicated in the 1970s when researchers went back to her children to do research on them without consent. We did have informed consent by that point, and many of the laws we have today that say you can't do research on people without consent were already in place. The same is true for the 1980s when her medical records were released to the press without the family's consent and published; that would not have been standard practice at that point. In 2009 when the book was going to press, more of her medical records were released and published, with pictures from her biopsies, etc.
TB: How did you handle being a white woman negotiating this story with the Lacks family?
Rebecca Skloot: They had every reason to not trust another white person. It took a long time to win their trust, and that had some to do with race. But they weren't going to trust anybody, for many reasons, it wasn't just about race. Once they began to trust me, and I began doing the work, Deborah [ Henrietta's daughter ] … said, yes, race was an important aspect of the story, but that the story wasn't just about race—it was also a story about class and education, and so much more, that it was an important story for everybody. In the end, she really felt it was important that I was white and that we were coming from such different backgrounds, approaching the story from different points of view.
According to a Press Release dated Nov. 9, 2010, The Immortal Life of Henrietta Lacks, by Rebecca Skloot, will be honored with the Wellcome Trust Book Prize. The £25,000 Wellcome Trust Book Prize is open to outstanding works of fiction and non-fiction on the theme of health and medicine. www.wellcomebookprize.org
