Hers is a tale 10 years in the telling—part detective story, part scientific treatise, part Lifetime movie and altogether enthralling. Entitled The Immortal Cells of Henrietta Lacks, this nonpareil example of creative nonfiction was written by Rebecca Skloot, who will grace the Reynolds Historical Library at UAB with her passion and expertise during an appearance on Tues., March 30, at noon.
What started out as an old-fashioned book tour is turning into a victory lap around the United States for Skloot, a 37-year-old Memphian. Her book is ensconced in the top 10 of the New York Times Best-Sellers list and has already hit No. 2 on Amazon.com’s. Skloot’s been featured on shows as diverse as CBS Sunday Morning and The Colbert Report, and she’s packing out venues throughout the country for readings and signings.
Michael Flannery, who booked Skloot for the Reynolds Historical Lecture Series, has gone so far as to bring in extra chairs for the occasion of her appearance. “I had no idea it was going to be this big,” he said last week. “It’s blossomed into a much higher profile lecture than I’d ever anticipated, which is a good thing.”
Flannery said he was pitched on the prospect by Erik Angner, a professor of philosophy and economics at UAB. Angner and his wife Elizabeth attended graduate school at the University of Pittsburgh with Skloot, who had toiled in the MFA program there. Familiar with the then-unpublished manuscript from having consulted with the author during its compilation, Angner suggested Skloot’s book would fit the Reynolds Series emphasis on medical humanities. “It’s a great story, but at the same time it raises all sorts of issues that not just the scientists, but the community, I think, would be interested in,” he said last week.
On one level, Skloot’s book meticulously recounts the life and times of Henrietta Lacks, a black tobacco farmer raised in Clover, Va., using prose so evocative you’ll swear you smell the bright leaf curing. At age 30, married and a mother of five, Lacks was stricken with a particularly virulent strain of cervical cancer. During her treatment at Johns Hopkins Hospital, her case crossed the desk of Dr. George Gey, a tissue culture researcher specializing in cancer, who’d searched in vain for 20 years for a strain of human cells that could survive outside the human body to facilitate research for a cure.
Gey acquired a sample of Lacks’s tumor cells, scraped from her cervix as a matter of course by a resident physician. Like so many times before, he placed them in a culture to reproduce. As had never happened before, the cells did so, like crazy. They did not die, but in fact reproduced a whole generation every 24 hours, and nobody knew why.
Gey now had an extraordinary medium for conducting controlled research, and he shared Lacks’s “immortal cells” with fellow scientists on several continents. Meanwhile, Henrietta Lacks had died in agony in the colored ward at Johns Hopkins and was buried in an unmarked grave in Virginia.
Neither she nor her family knew that Henrietta’s cells, now known as HeLa, had survived her and in fact were being mass-produced for laboratories around the world. Henrietta would remain a secret in scientific circles for the next quarter-century.
When Rebecca Skloot heard the story of HeLa cells as a teenager in community college biology class, she began to obsess about who the person whose living cells these were might have been. Skloot, too, would become a part of the story, through her painstaking, self-financed attempts to track down the Lacks family and learn about Henrietta, the human being.
“I think the project is incredibly ambitious, in that she aspires to tell not just the history of the science, but also the history of research ethics in this country, and the particular relationship between African-Americans and the biomedical science world, and she raises all these issues in the context of the legal situation surrounding the ownership of human cells,"Angner says. "It’s an incredibly ambitious project in that sense and she’s obviously tried very hard to get it all right.”
We caught up with the author by phone in Virginia last week as she prepared for the next leg of what she calls “The Immortal Book Tour,” a promotional junket she’s organized herself, with the help of social networking and her father, Floyd.
BIRMINGHAM WEEKLY: So which was the bigger kick for you, being on CBS Sunday Morning or The Colbert Report?
REBECCA SKLOOT: I could not possibly say. I mean, for me, the Colbert thing was really great, it was really fun to meet him and do the whole show, but the CBS segment was just incredible, in that it was the first time the Lacks family ever got any air time, where they could talk about the way they felt and have a big presence on TV. So that was huge.
You’ve taken your publishing destiny in your own hands with the do-it-yourself book tour.
There was never a question in my mind that I would go on a book tour. When I started hearing, “Oh, book tours don’t really work,” “We don’t really do book tours anymore”—authors were telling me that book tours are dead—I just kept saying no, I just don’t buy it. The way people are reacting to the book is the same way I reacted to the story the first time I heard it. It’s a very powerfully emotional story and when people hear about it, they just have to know more. That’s exactly what happened to me and that’s why I spent all these years writing the book. I just had this very deep feeling that I needed to go out and talk about this book, because people have questions. They get to the end of the book and they want to talk about it. So much of the book is about the importance of needing to communicate science to the general public and to have a dialogue about science that I feel like it’s part of the work of this book to be out talking about it with people.
Do you get a different response from a scientifically astute crowd, like you’ll have here at UAB?
RS: The events that I do on campuses, like Birmingham, they’re open to the public and I encourage anybody to come to them, and they do. Usually it’s a mix of people from the general public, people from the universities and within the universities, there are scientists, African-American studies, historians—a range of people who have a real deep interest in the story, so it’s really a diverse audience, even within academe. A lot of scientists really embrace the story. I hear over and over again that scientists are happy the story’s out there. And I hear from scientists all the time who have worked with HeLa cells, who say essentially, “Oh my God, I had no idea; I’ve been working with these cells my entire career,” or, “I did my dissertation on these cells, I feel I owe a lot of my professional life to these cells and I never stopped to wonder where they came from.” HeLa cells are omnipresent in science. They’re these things in a lab that people aren’t really taught to wonder about. There was a pseudonym out there for a long time, “Helen Lane.” Most scientists, if they did hear about the person of those cells, they heard that they were donated from a woman named Helen Lane and that was sort of it. So it’s really shocking to a lot of scientists to hear that they’ve been working with these cells so long and didn’t wonder about them, or that they had gotten misinformation themselves. They’ve had some pretty incredible responses to the story.
How did you organize the incredible volume of material you used to write the book?
[Laughs] That’s probably what took 10 years. It was a huge undertaking. The story of Henrietta Lacks on a very basic level has been told over and over again—but what hadn’t been told before was the family’s story, or her story as a person or the real scientific landmarks of the cells. The book traces so many different narratives, it was a logistical and organizational nightmare! Just the sheer volume of material—if you go onto a scientific database and type the word “HeLa”, it’s like typing “and” in Google; you get thousands and thousands and thousands of hits, because there are so many research papers done with HeLa cells. Trying to sort out what’s important was a big undertaking. I used a large wall with index cards and corkboards, things like that, but it took a very long time.
You made what some writers would call a controversial choice to render the dialogue of the Lacks family in specific dialect.
It was never a question for me whether I’d do it. It seemed just the idea of taking and rewriting someone’s language was just so wrong to me, actually inaccurate—it isn’t what they said. And the family’s language is so much a part of who they are. They have these beautiful ways of talking about things. One, for some reason, that stands out: one of Henrietta’s cousins was describing another one of their cousins who’s a really big, burly guy, and she said he’s “an over-average man.” I just thought that was so great, I could never have come up with that, but it’s so perfect. Talking to one of Henrietta’s cousins about this, I said that some people said that I should “clean this up.” I mean, I have a problem with the idea that this is cleaning something up when it’s changing the way someone talked, and she said to me, “If you pretty up how people spoke and change the things they said, that’s dishonest. It’s taking away their lives, their experiences and their selves.” And I totally agree with that.
In the book, Henrietta’s daughter, Deborah, says, “It isn’t a race thing.” Yet it’s hard to overlook the unmistakable signs of race prejudice throughout this story.
It’s very much about race, but it’s also about class, and I think for Deborah those two things were intertwined in a way that’s very hard to separate. When she said this isn’t about race, she meant it’s not just about race. It’s about anyone who doesn’t have money, who doesn’t have access to medical care, and it’s also about the people who do have money and the effect of the way they live on other people. I grew up in the Pacific Northwest in a completely different culture than Deborah grew up in. It was a huge learning experience for me to become a part of their lives and to go and learn firsthand about the discrimination and just access problems that they had—access to health care, access to education, access to any kind of information about finance or their family. It’s incredible the way these problems permeate. The other thing that was very big was religion, a huge part of the story. Part of how the family came to terms with what happened with the cells was religion. They believed that Henrietta was brought back to life as an angel. I came from an entirely nonreligious background, so in addition to learning about their culture, religion was a big part of that. I read the Bible for the first time and went to churches for the first time with faith healing. The different things that I was exposed to had a big effect on me.
Was Henrietta Lacks, descended from slaves, herself enslaved by science?
There are certainly people who think that. When you look at the facts on paper, it’s a pretty stark contrast: a black woman whose cells are used in science without her knowledge and bought and sold without her family benefiting. But the Lacks family has gotten to a point where they try to separate what happened with Henrietta’s cells versus what happened to them. Henrietta’s cells have been this incredible thing for science and her family really sees that as a miracle, and they’ve gotten to a point now where they can look at them and say, “We think that they’re incredible, and they’ve done wonderful things and that makes us happy. We’re very glad that her cells are out there and being used in the way that they are. We wish it didn’t happen the way that it did. We wish they’d told us, we wish they’d asked, because we would have said yes. We wish they’d explained things to us when we asked, we wish they hadn’t released her medical records.” There were a lot of things they were unhappy about in terms of the way that they were treated, but the way they think about the cells definitely does not reflect a feeling of her being enslaved. It’s more of her being an angel. In life Henrietta was this woman who just took care of everybody, she lived to do that, and so to the family it makes perfect sense that she’s doing that in death, too. They don’t see the cells themselves as a dark or negative thing. It’s more the story behind them that they do.
Did George Gey do wrong?
George Gey had no ill intentions whatsoever. Taking cells from people was absolutely standard practice in the 50’s. In a lot of ways, it still is today. The way the story has been held up historically is, you know, racist white scientist stole these valuable cells from a black woman because he knew they were valuable, maybe he didn’t treat her cancer in order to keep them alive—none of that’s true. He was a guy who was absolutely devoted to curing cancer. He took cells from himself and his own kids. He never sold [the HeLa cells], he never tried to patent them, he never tried to patent anything. He was pretty impoverished himself, but he spent his own money in the lab. So, yeah, he’s been demonized in the past in a way that is not accurate. Scientists then were not even taught to step back and ask who are the human beings behind these cells. The ways that we think now about informed consent and researchers’ obligations to their subjects just didn’t exist then. It was all about the good of humanity, and everybody had to play their part to advance science and people should feel fortunate to be used in research. It was a completely different mindset than the one we have now, but it was not ill-intended.
It’s interesting how Henrietta’s treatment in the hospital system 50 years ago reflects on the current health care debate.
The thinking in science has been that when you go and have a biopsy taken at a hospital, you sign a form that says my doctor can dispose of my tissues any way he sees fit or use them in research. They go into this pipeline and they’re stripped of their identity. The attitude has long been, this is for the good of science, everybody benefits when we do this tissue research. The thing is, not everybody benefits, because we don’t have universal access to health care. There is an imbalance in this country, so the idea that so many of the medical advances that are coming from these things aren’t actually available sometimes to the people who provided some of the raw materials is a pretty stark point in the health-care debate, I think.
You spent 10 years of your life writing this book. Do you ever dream of Henrietta?
Yeah, absolutely. No question. I have for years. And I often fantasized about—like any writer who’s been working on something about someone who’s been dead for a long time—you’d fantasize about finding a big trunk full of letters or photographs. I always held out for that idea that I would someday, some way, find this treasure trove of some documentation of her own thoughts, and it just doesn’t exist, I think. Her family didn’t read and write much, they didn’t have cameras. But, yeah, I dreamed of that. There were times when I would actually have dreams where I found trunks of letters and they were the most gleeful dreams I’ve ever had in my life.
Has life on a book tour lived up to your expectations?
Oh, yeah. And more so. Everywhere I go, it’s been standing room only. People come who have read the book and people come who haven’t read the book, and they all have questions, and we’re talking about the stuff that, when I wanted to write the book, I wanted to get out, to tell her story and spur conversation about all this. I feel like it’s happening. I mean, it’s exhausting, but it’s so exciting at the same time.
And have you come to terms with being a “New York Times best-selling author”?
It’s funny, people have asked me what does it feel like, does it feel any different, and I’m like, it doesn’t feel like anything. And part of it, I think, is because I’m out here, talking to one group at a time. I’m ecstatic, because it means all of those people are getting Henrietta’s story and that the story’s really getting out there in a wide way, and that’s really what I wanted, and that’s what the family wanted, too. I’m sure there’ll be a point where I stop this kind of crazy tour and I sit down and go, “Whoa, what just happened?” But I’ve been so busy I haven’t been able to do that yet. Which is probably good.
Rebecca Skloot will speak from noon-1 p.m. on Tues., March 30, at the Reynolds Historical Library, which is located on the third floor of the Lister Hill Library of the Health Sciences at 1700 University Boulevard. Following her reading, she will sign copies of her book, which will be on sale at the venue. Admission is free.
Courtney Haden is a Birmingham Weekly columnist. Write to email@example.com.