Yes. Oprah Winfrey and Alan Ball will be producing the film version of The Immortal Life for HBO. I’m a consultant on the film, as is the Lacks family, which they’re very excited about. Learn more about the upcoming film. Harpo and HBO plans to go into production for the film within the next year; so far no actors have been cast – as soon as they are, that information will be posted here.

The combination of Oprah, Alan Ball and HBO is a dream team for me. I’ve always been a huge fan of everyone involved, and I think HBO is the perfect home for this movie. Several people have asked why I went with HBO instead of a big screen major motion picture version, and there are several reasons. HBO makes some of the best and smartest movies out there these days, particularly when it comes to complex true stories that mix science, ethics, and real human stories. It was very important to me that the film find a home that would do justice to the family’s story, the science, and the scientists — I have no doubt HBO, Oprah, and Ball will do just that. I’m very excited for it.

The story of the HeLa cells is important for many of reasons: It’s about race and class and science and ethics and the importance of access to education and health care, all of which are vital current issues. But one reason the story is important today is that we live in a time when medical research relies more and more on biological samples like Henrietta’s cells. A lot of the ethical questions raised by Henrietta’s story still haven’t been addressed today: Should people have a right to control what’s done with their tissues once they’re removed from their bodies? And who, if anyone, should profit from those tissues? Henrietta’s story is unusual in that her identity was eventually attached to her cells, so we know who she was. But there are human beings behind each of the billions of samples currently stored in tissue banks and research labs around the world. The majority of Americans have tissues on file being used in research somewhere, and most don’t realize it. Those samples come from routine medical procedures, fetal genetic-disease screening, circumcisions, and much more, and they’re very important for science—we rely on them for our most significant medical advances. No one wants that research to stop, but it’s pretty clear that many people want to know when their tissues are being used in research, and when there’s a potential for the results of such research to be used commercially. The story of Henrietta, her family, and the scientists involved put human faces on all of those issues, which can otherwise be pretty abstract.

This is the story of how cells taken from a black woman without her knowledge became one of the most important advances in medicine and launched a multibillion-dollar industry, with drastic consequences for her family. It’s inextricably linked to the troubling history of research conducted on African Americans without their consent, and many people—particularly African Americans—are hungry to learn Henrietta’s story and how it fits into that history.

For decades, the story of Henrietta Lacks and the HeLa cells has been held up as “another Tuskegee,” the story of a racist white scientist who realized a black woman’s cells were valuable, stole them from her, then got rich selling them—perhaps even withholding treatment for her cancer in order to be sure the cells would grow. But none of that is true. Henrietta got the standard cervical cancer treatment for the day, and no one knew her cells would be valuable. George Gey gave them away for free and never profited directly from them (they were later used commercially by others). In 1951 when Henrietta showed up at Hopkins, taking tissue samples from patients without consent had been standard practice for decades. Henrietta’s cells were taken as part of a study on cervical cancer for which researchers were taking samples from any woman who walked into Hopkins with cervical cancer, regardless of race. Henrietta wasn’t targeted because her cells were known to be valuable, or because they were trying to grow cells from a black person. Gey didn’t even know she was black until after the cells grew.

That said, race did play an important role in the story: During the Jim Crow era, Hopkins was a segregated charity hospital—patients in the “public” ward where Henrietta was treated were there because they were either black or poor (often both). They couldn’t get treated elsewhere. And the prevailing attitude then was that since “charity cases” were treated for free, doctors were entitled to use them in research, whether the patients realized it or not. Henrietta’s doctor once wrote, “Hopkins, with its large indigent black population, had no dearth of clinical material.” That attitude was widespread at the time.

But this story is just as much about issues of class and economic injustice. Many people have asked me, “Would those cells have been taken from her if she’d been white?” The answer is yes, if she’d been white and poor. Many of the difficulties Henrietta’s family faced came down to issues of class: their lack of access to education; their inability to afford health care despite the fact that their mother’s cells helped lead to so many important medical advances. The Lacks family often says, “If our mother was so important to medicine, why can’t we get health insurance?” That question gets at the heart of what many readers find most upsetting about the Lacks family’s story.

In many ways, The Immortal Life is about how essential it is for the public to have access to science—that it be explained to them clearly, and that they feel comfortable learning about it—and the damage that can result when this doesn’t happen. It was very important to me that everyone be able to read The Immortal Life regardless of whether or they know about science (or are naturally interested in science) or not. One of the highest compliments I get from readers is that many say they almost didn’t read my book because it was about science, but that in the end, they were glad they did because they were able to follow all of it, even if they had no scientific background at all. One of my main goals in writing the book was to be sure that it was accessible to all readers.

Some of that depends on each individual reader, because there are a lot of potential messages from the book: it’s about trust, race and medicine, class, access to education and health care, it’s also the story of a family and the impact that losing a mother can have on her children, and much more.

It’s also about the fact that there are people behind every one of the billions of biological samples that are used in research every day. I can’t count the number of e-mails I’ve gotten from researchers who say that they heard me talking on the radio or read the book and had this very powerful reaction of saying “Oh wow, I had no idea. I did my dissertation on HeLa cells, I work with them every day in my lab—I owe a lot of my career to Henrietta’s cells, and I never once stopped to think about where they came from, whether she had given consent, or whether her family might care about that.” These are questions that scientists don’t often think about. I also hear researchers saying that after learning the story of the HeLa cells, they no longer complain about the regulation of science and the mountains of forms they have to fill out for every study they want to do. In the book, you find out the history behind those forms, why they’re now required, and why it is important. Those are crucial take-home messages.

But this is also a story about the fact that there are human beings behind every biological sample in a laboratory, and behind every scientist as well. The scientists in the HeLa story have long been demonized in ways that weren’t factually accurate, so I hoped to set that record straight.

I know many writers who’ve spent decades of their lives working on wonderful books that didn’t take off for any number of reasons having nothing to do with the books themselves. There are so many factors in the publishing process that are out of the writer’s control. I knew all that going in, but I always believed that the facts of this story are so incredible that if I could get them out to people, they would have the same reaction I did, which was “Oh, my God. I have to tell people about this.” So on the one hand, I could have only dreamed that the book would be so widely received. But on the other hand, it doesn’t surprise me that people are having such a strong reaction, because I had the same reaction myself when I first heard the story.

Henrietta’s children and grandchildren read The Immortal Life of Henrietta Lacks before it came out as part of the fact-checking process. They were very happy with it—they didn’t object to any information in the book or ask me to remove or change anything, other than pointing out some dates or other small factual things that needed fixing. Some of the story is still painful for Henrietta’s children, but they’re pleased that the story is out there getting a wide public response; they’re also happy to know about the amazing science that Henrietta’s cells contributed to, which they are very proud of. For the younger generations of Lackses, it was a way to learn about their history: Their family didn’t talk much about what happened to Henrietta or her children. So the younger generation knew little about Henrietta and the cells. They didn’t know what Henrietta had contributed to science, or what her children went through in the process.

When the book came out, the Lacks family would often come to public events where I speak about the book — sometimes they’d just sit quietly in the audience and listen, other times they answer questions. Now they travel extensively giving talks of their own. Without fail audiences greet Henrietta’s family with cheers and standing ovations. They thank Henrietta’s family for her contributions to science and share stories of how they personally benefited from her cells. They say things like, “I’m alive today because of a cancer drug Henrietta’s cells helped develop.” Scientists often stand up saying, “Here’s what I did with your mother’s cells, and thank you, I’m sorry that this has been hard for you and that no one told you what was going on.” Scientists and general readers stand in long lines waiting for their autographs. I believe that the enormous public response to the book has been positive for the family, that there’s been some healing through that process for them. But they are still struggling financially as portrayed in the book and hope that will change. (See the next FAQ question for more info regarding money)

UPDATE: Exciting news for fans of The Immortal Life of Henrietta Lacks: you can now visit the Lacks Family’s new website & blog, designed by Henrietta’s grandson David Lacks. You can also follow them on Twitter and on Facebook. I’m so thrilled to see how much traffic they’re getting from all over the globe – help spread the word by sharing/liking/following them!

The family has benefited from the book in several different ways, including the closure I mentioned above. When it came to money, I didn’t want to potentially benefit from the family and their story without doing something in return. So I set up The Henrietta Lacks Foundation, a 501c3 nonprofit charity, as a way I could give something back to the Lacks family and other similarly needy families, as well to encourage others to make similar contributions. I donate to the foundation from the proceeds of my book and related speaking events, as well as the film version of the book, in addition to my many other fundraising activities for the foundation. I run the foundation as its president as an unpaid volunteer. The foundation has been in existence since January 2010, and anyone can donate via The Henrietta Lacks Foundation’s website. We receive regular donations from the general reading public and individual scientists who feel that they have benefited from HeLa cells in some way and want to do something in return for the family.

Among other things, the foundation provides scholarship funds for descendants of Henrietta Lacks, so they can get the education that Henrietta and her family didn’t have access to. It also aims to help provide health care coverage for Henrietta’s children. So far the foundation has given out more than 28 grants to cover tuition and books for Henrietta’s grandchildren, great grandchildren, and great-great grandchildren who are now working toward high school, undergraduate, graduate, and trade degrees; also for medical and dental assistance. The foundation’s mission is to offer assistance to others in situations similar to the Lacks family as well. For more information, visit HenriettaLacksFoundation.org, or see this New York Times article about Rebecca Skloot’s efforts with the Henrietta Lacks Foundation and details of several of the grants given to date.

In addition to the funds the Lacks family has received from the foundation, Henrietta’s sons are paid consultants on the HBO film version of The Immortal Life, and they and other members of Henrietta’s family regularly appear as paid speakers at events related to The Immortal Life. You can see a schedule of their speaking events that are open to the public online here. If you would like to invite the Lacks family to speak, please e-mail the details of your request to Miriam Feuerle at Lyceum Agency: miriam [AT] lyceumagency [DOT] com, or call her at 503.467.4621.

This is the question I get more often than any other. The answer is that no research institutions, universities, or companies have given money to the Lacks family directly, and they likely never will. There is concern among research organizations that giving money to the Lacks family would set a legal precedent: If they pay Henrietta’s family for use of HeLa cells, what about the millions of other people whose cells and tissues have been used in research? Who pays them, and how much? One of my hopes in setting up the foundation was that some of those companies and research institutions might feel that donating to a foundation in Henrietta’s name would let them recognize her contribution to science and the impact it had on her family, without concern for setting a legal precedent. So far that hasn’t happened. You can hear me answer this and other related questions in more detail in numerous interviews on the Media page of this site, particularly the interview with Tavis Smiley.

Soon after the publication of The Immortal Life, Hopkins released this statement about Henrietta Lacks and the HeLa cells, which addresses questions about the cells being taken without consent and the fact that Hopkins did not financially benefit from the cells, but does not address the use of Henrietta’s children in research without consent, or the release of Henrietta’s medical records to the press. Hopkins has recently taken several steps to honor Henrietta’s contribution to science and further the public conversation about issues raised by the book: The entire entering freshman class at Hopkins in 2010 was required to read The Immortal Life for university-wide discussion. In addition, Hopkins launched an annual Henrietta Lacks Memorial Lecture Series, and established the Henrietta Lacks East Baltimore Health Sciences Scholarship to support promising graduates of Paul Laurence Dunbar High School. It is a $40,000 scholarship ($10,000 per year for up to four years) that will be awarded annually to one exceptional graduate who chooses to pursue a career in health or science, with hopes of educating and inspiring the next generation of physicians, nurses, scientists, and health science professionals. And The Johns Hopkins Urban Health Institute established The Henrietta Lacks Award for Community-University Collaboration, a $15,000 annual award recognizing outstanding collaborations that focus on objectives like poverty elimination, social justice, neighborhood redevelopment and community health and well-being. More information is available on Johns Hopkins’ website.

A group at Hopkins has also worked closely with the Lacks family and the Henrietta Lacks Foundation to ensure that members of Henrietta’s family get their healthcare needs taken care of.

Yes. Henrietta’s family has set up their own website with information about how to donate directly to them.

The story of the HeLa cells isn’t just about cells being taken from a woman without consent. There’s much more to it: No one told her family that the cells existed until the ’70s, when scientists wanted to do research on her children to learn more about the cells. Her children were then used in research without their consent, and without having their most basic questions about the cells answered (questions such as, “What is a cell?” and “What does it mean that Henrietta’s cells are alive?”). This was very frightening, particularly for Henrietta’s daughter Deborah. The science all had a very scary sci-fi quality to it, so she had a very hard time distinguishing what was reality and what wasn’t when it came to science. She worried that there were clones of her mother walking around that she might bump into. And she worried that what the research scientists were doing to her mother’s cells somehow caused her mother pain in the afterlife. She’d say, “If scientists are shooting my mother’s cells to the moon and injecting them with chemicals, can she rest in peace?” For her, these existential questions were really difficult.

There were other things that the family found upsetting. At one point, Henrietta’s medical records were released to a reporter and published without her family’s permission, which was very traumatizing for her children. Henrietta’s sons particularly were very angry when they learned that people were buying and selling Henrietta’s cells, which helped launch a multibillion-dollar industry, yet her family had no money. To this day, they can’t afford health insurance.

The Lacks family has gotten to a point where they try to separate what happened with Henrietta’s cells from what happened to them. Henrietta’s cells have been this incredible benefit to science and her family really sees that as a miracle, and they are now able to 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 the Lacks family 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 that Henrietta was being enslaved. It’s more a feeling of her being an angel. In life Henrietta was this woman who lived to take care of everybody, 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.

That said, they are still quite upset about the issue of money and the fact that others have profited from the cells and her family hasn’t, which is still the case today. The Lacks family is still hoping that the many research organizations and companies that have profited from HeLa cells will do something to honor Henrietta and recognize what her family went through. See the earlier question above about the response from Hopkins and companies for more on that issue.

Dr. Roland Pattillo, a professor at Morehouse School of Medicine and his wife, Pat, bought a marker for Henrietta’s grave on May 29, 2010. There was a beautiful unveiling ceremony that was attended by the Lacks family. Please read a beautiful post by scientist David Kroll, who also attended the ceremony. His post is filled with beautiful photos of the day and a tribute to all Henrietta’s cells did for science.

I’m impressed by the number of eagle-eyed readers who notice this discrepancy and email asking about it. August 1, 1920 is Henrietta’s correct date of birth. That’s the date her family listed as her birthdate, it’s also listed as her date of birth in her medical records, on her marriage certificate, and on her autopsy report. It’s also on her tombstone, which now rests next to her mother’s stone in the family cemetery in Clover. Whoever wrote up Henrietta’s death certificate simply made an error, and her birthdate wasn’t that person’s only error: The bottom of Henrietta’s death certificate says she was buried in Roanoke, Virginia. But in fact, she was buried about 100 miles from Roanoke, in Clover, Virginia — a fact I verified with the local undertaker as well as more than 20 people who attended her funeral there.

The prologue of the book tells the story of how I learned about Henrietta’s cells for the first time when I was sixteen, but it doesn’t really go into why that story grabbed me to the extent that it did. I think that’s because it wasn’t until after the book was published that I began to understand why the story had such an impact on me. When I first learned about Henrietta’s cells in Mr. Defler’s biology class, the first questions I asked him were whether she had any children, what they thought about Henrietta’s cells living on all these years after her death, and what did the fact that she was black have to do with it all?

I realize now that my questions weren’t obvious ones for a sixteen-year-old to ask, but something was happening in my life that I think primed me to ask questions about the cells. That same year, my father had gotten sick with a mysterious illness no one was able to diagnose. He’d gone from being my very active and athletic dad to being a man who had problems thinking, and he spent all of his time lying in our living room because he couldn’t walk. It turned out that a virus had caused brain damage, and he eventually enrolled in an experimental drug study. Since he couldn’t operate a car, I drove him to and from the hospital several times a week and sat with him and many other patients as they got experimental treatments. So I was in the midst of watching my own father go through research and was experiencing the hopes that can come from science, but also the frustration and fear. It was a frightening time, the research didn’t help him, and in the end the study was dissolved without fulfilling promises it made to the patients about access to treatment. The experience really taught me about the wonder and hope of science, but also the complicated and sometimes painful ways it can affect people’s lives.

I was in the middle of that experience when my teacher mentioned that Henrietta’s cells had been growing in labs decades after her death. So I asked the questions I did because I was a kid wrestling with watching my own father being used as a research subject. But I couldn’t shake the questions Henrietta’s cells raised in my mind, and nearly a decade later when I took my first writing class, my curious obsession with Henrietta was the first thing I wrote about.

I fought against being in the book for years. Part of how I won the trust of the family was by telling Henrietta’s daughter Deborah that she could come with me when I did my research, that I would teach her about her mother and the HeLa cells. So we spent a lot of time traveling together. When I came home from reporting trips filled with stories about my time with the Lacks family, my agent, friends, editor, and family all had the same reaction: They’d say, “You have to put that in the book, because the family’s response to you is part of the story—it shows how deeply they’ve been affected by Henrietta’s cells and their legacy.” Deborah Lacks eventually started saying the same thing (she’d sometimes shake her fist at me and say, “Don’t you make me be in that book by myself! You’re part of the story now too—Henrietta’s gonna get mad and come get you if you try to leave yourself out of there!”). But I still resisted for years, saying, “I don’t belong in this story—it’s the Lacks family’s story, not mine.”

I teach writing, and I always harp on my students, telling them, “stop inserting yourself into other people’s stories.” But eventually it became clear to me that part of the Lacks family story was about the many people—scientists, con artists, journalists, you name it—who had come to them over the years wanting something from them related to the HeLa cells. Without realizing it, I had become a character in the Lacks family’s story, because I was another one of those people. I was a reporter who’d impacted Deborah Lacks’s life in many direct ways, putting her into situations—like visiting laboratories at Hopkins and the institution where her sister died—that she wouldn’t have otherwise been in, sometimes in ways that proved very difficult for her. In the end, I realized it would be dishonest of me to leave myself out of the book. It wasn’t about me inserting myself into their story, it was about admitting that I had become a character in their story without realizing it. It was, in a sense, disclosure. But I always held on tight to the knowledge that it was their story, and I tried to write it accordingly.

In terms of when I realized I had to be in the story: It happened as a result of a scene (now in the book) in which Deborah nearly had a stroke from some particularly traumatizing information, and one of her cousins spontaneously performed something that looked a lot like an exorcism in an attempt to physically transfer the psychic burden of the cells from Deborah into me.

It’s amazing and exhausting to work on a book over such a long period. One of the things people often ask me is, “Don’t you wish you had done this faster? Why did it take so long?” Reporting a story for so long changes your understanding of it. If I had written this book five years faster, it wouldn’t have worked. I wouldn’t have understood the story the way I came to—it’s a complicated story with many different threads, and it’s one that has historically been told in a way that demonized science. I really wanted to tell all sides of the story in a balanced way, so I spent extensive time researching the science and the scientists, and the evolution of bioethics, as well as Henrietta, her cells, and her family.

The book traces so many different narratives, it was an enormous logistical and organizational challenge. Just the sheer volume of material was overwhelming to sort through—if you go onto a scientific database and type the word “HeLa,” it’s like typing “and” in Google: you get thousands and thousands of hits, because there are so many research papers done with HeLa cells. Trying to sort out from that what was essential took a lot of time. Then organizing it all into a larger narrative was another challenge (I used a large wall with index cards and corkboards, which you can learn more about in the question below about how I structured the book).

Another big reason it took ten years to write was the challenge of winning the trust of the Lacks family, which became part of the story, as I discuss below. It took me more than a year and a half to convince them to even talk to me, and after what they’d been through, they had good reason not to trust anyone. When I started working on this book, I thought it was going to be a story about HeLa cells and the woman behind them. I had no idea that it would also become a book about the impact those cells had on her family.

People occasionally ask why my reporting in the book seems to end many years before the book was actually published. The trick about writing nonfiction is that the story often continues on as the writer is working on the book, which was the case with The Immortal Life. The main narrative of Deborah’s quest to learn about her mother’s cells and come to peace with them ends in 2001, because that was the point where she felt she had found peace. But my reporting for the book took many years beyond that — unraveling the history of Henrietta life, her ancestors, her cells, the science and scientists involved, all took many additional years of work. Much of the information you read throughout the book was gathered in the years after 2001, but the story of me gathering that information wasn’t an essential part of the main narrative, so I didn’t include it in the story. Instead, I included a chapter at the end of the book that brings the family story up to date to the time of the book’s publication. Beyond and during all those years of reporting, the book publication process of course takes time.

The publishing process was another reason this book took ten years. While working on this book, I went through five editors and three publishing houses, fought many battles, and spent years doing publicity for the book before the finished book made its way onto shelves. All this while working full time as a freelance writer to try to pay my bills and finance the research needed for the book. You can read a bit about the book’s publishing saga online here. You can read about my work organizing my own book tour here, and you can read about the years I spent working to publicize the book (long before it was even published) here and here and here and here.

The type of nonfiction I write is commonly called Creative Nonfiction, which can be a confusing term. Some readers assume, incorrectly, that calling something “Creative Nonfiction” means it’s writing that gets creative with the facts by changing them or making things up. But that’s not the case. Creative Nonfiction (also known as Literary Journalism or Narrative Journalism) is nonfiction that uses the tools normally associated with fiction or film making (scenes, dialogue, narrative structure, etc.), and applies them to a story that is factually accurate (rather than being fiction, which is made up). In Creative Nonfiction/Literary Journalism, the facts of the story are as journalistically accurate and verifiable as any other type of journalism, they’re just presented in a way that reads like a narrative story rather than a just-the-facts news story.

I explain how I recreated the historic scenes in The Immortal Life of Henrietta Lacks in the section titled “A Few Words About This Book,” (pages xiii-xiv) and in the Notes section (starting on page 346). But readers often contact me seeking more information about how I reported these stories, so below you will find further information not included in the book.

Here you can watch a short video made by Educurious* in which I explain my reporting process in detail, and walk you through several scenes in the book to show how I researched and reconstructed them. This includes a detailed discussion of how I recreated Henrietta’s dialogue, which is something readers often ask about.

And below you will find an excerpt from the book You Can’t Make This Stuff Up, by Lee Gutkind, for which he interviewed me and described my researching and fact checking process for the same scenes I mention above (which can be found on pages 13-17 of The Immortal Life of Henrietta Lacks):

Rebecca Skloot pulled together the story Henrietta shared with Margaret and Sadie, based on interviews with surviving family members who knew Henrietta and David Lacks. But it’s the details in the first paragraph, the first scene, that make the story come to life. Using Henrietta’s medical records, Skloot established the date of Henrietta Lacks’s visit to Johns Hopkins after the birth of her fifth child and verified the story that Sadie and Margaret told her about Henrietta finding the tumor herself in the bathtub. She laid the groundwork for essential scenic details through interviews with Henrietta’s husband (who remembered that it was raining, that he parked under an old tree) and Henrietta’s doctors and nurses (who remembered the waiting room and the admissions process Henrietta went through). Skloot then verified and fleshed out those stories through document research. She verified that it was raining that day through the weather bureau. Using archival photos, she was able to verify and enhance the descriptions sources gave her of rooms. She found a photo which confirmed that there was a tree outside where David said he parked. She shared that photo with a botanist to be sure it was an oak tree.

Skloot was an obsessed researcher … she tracked down and interviewed anyone who might have anything to say about the Lacks family then and now. She raided the bowels of the hospital for old medical records and pieced together conversations between the Lackses and the Hopkins medical staff, as accurately and vividly as possible. She also recreated the tenor of the Jim Crow era in which Henrietta lived …

With special thanks to *Educurious, an innovative non-profit organization dedicated to creating the high school experience that American students need for success in college, careers, and life. And to Lee Gutkind, for permission to include the above excerpt from his book.

Please see this video to hear me explain how and why I came up with the braided structure for my book. Hint: It has to do with Fried Green Tomatoes at the Whistle Stop Cafe and the movie Hurricane, about Hurricane Carter the boxer. You can also read more about how I developed the book’s structure, and see photos of my research notes in this interview for The OpenNotebook, by David Dobbs as well as pictures of my index-card storyboard of the book in this interview with Nieman Storyboard from the Nieman Foundation at Harvard.

It was never a question for me whether I’d do it. The idea of taking and rewriting someone’s language was just so wrong to me, and inaccurate—rewritten quotes aren’t what they said. And the family’s language is so much a part of who they are. They have beautiful ways of talking about things. Here’s one example that stands out for me: a cousin of Henrietta’s was describing one of Henrietta’s young love interests, a big, burly guy, and she said he’s “an over-average man.” It’s so perfect, and it’s something I never would have come up with myself as a description. Changing it would have only weakened its descriptive and poetic power.

I asked one of Henrietta’s cousins what she thought about me using the family’s dialect in the book 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.” I agree with that.

Deborah always said she believed very strongly that it was important to tell what she called “the good and the bad” of the family story — the violence, the sexually transmitted diseases, the abuse, and everything else — because it’s all part of the story of what happened when the world got Henrietta’s cells and her family lost her as a mother. And of course, Henrietta’s cancer was caused by one sexually transmitted disease (HPV), and made more aggressive by another (syphilis) — those details are an essential part of any story about the HeLa cells (see below for more information about why Henrietta’s cells grew).

Deborah did not read the book in its entirety before it was published, but she did know all of the information that was included in the book, and she approved of it. She never asked that any information be withheld or changed. She and I talked extensively about the book after it was finished, and she decided that she did not want to read it herself, because she didn’t want to re-live the difficult moments that are portrayed in detail in the book. Deborah knew all of the facts in the book, and she read selected parts of it long before its publication. About a dozen other members of Henrietta and Deborah’s immediate family read the book before it was published, for fact checking purposes, and approved of its publication.

The most surprising and troubling part of the writing and research experience for me was definitely the trip that Deborah and I took to Crownsville to try to find her sister’s medical records. What we found was far more disturbing and shocking than either of us could have imagined. But it was also troubling for me as a reporter—finding Elsie’s photo in Crownsville was one of the events that made me realize I had to be in the book. That trip turned out to be a very dangerous one for Deborah—by then I couldn’t have stopped her from coming with me if I’d tried at that point, and in the end, she was very relieved to know the information we found, but she came very close to having a stroke on that trip…nether of us realized going in how physically dangerous that trip really was for her.

I’m impressed and heartened when I hear from readers who’ve actually done the calculations and realized that these two figures describe very different numbers of cells. While they are right, 50 million metric tons of cells is more than 350 million feet of cells, both statements are still accurate, and were verified before the book went to press by the scientists who did the original calculations, and outside experts who verified them.

The reason those two numbers are so different is that those two scientists did their calculations decades apart, and HeLa cells are always growing, so the later estimate is a larger number than the earlier one. That earlier figure would be far more than 350 million feet now, but no one did a follow up calculation to bring it up to date as the cells continued to grow, so the most accurate figure we have to date is still that they’d wrap around the earth more than 3 times, spanning more than 350 million feet.

People sometimes ask how that 50 million metric tons figure was determined: It came from calculating how many cells could have ever grown — it was a hypothetical calculation because that many cells couldn’t have been saved and put on a scale. That calculation was based on the way HeLa cells are known to divide (specifically how often they double their numbers) and the amount of time they’d been alive at the time the calculation was made. The details of who developed that calculation and how it worked are in the notes section of the book.

That’s still a bit of a mystery. Scientists know that Henrietta’s cervical cancer was caused by HPV, and her cells have multiple copies of the HPV genome in them, so some researchers wonder if the multiple copies of HPV combined with something in Henrietta’s DNA caused her cells to grow the way they did. Henrietta also had syphilis, which can suppress the immune system and cause cancer cells to grow more aggressively. But many people had HPV and syphilis (particularly in the ’50s) and their cells didn’t grow like Henrietta’s. I’ve talked to countless scientists about HeLa, and none could explain why Henrietta’s cells grew so powerfully when others didn’t. Today there are other immortal cell lines, and it’s possible for scientists to immortalize cells by exposing them to certain viruses or chemicals, but there still hasn’t been another cell line like HeLa, which grows in a very unique way.

Since the ’50s, if researchers wanted to figure out how cells behaved in a certain environment, or reacted to a specific chemical, or produced a certain protein, they turned to HeLa cells. They did that because, despite being cancerous, HeLa still shared many basic characteristics with normal cells: They produced proteins and communicated with one another like normal cells, they divided and generated energy, they expressed genes and regulated them, and they were susceptible to infections, which made them an optimal tool for synthesizing and studying any number of things in culture, including bacteria, hormones, proteins, and, especially, viruses.

Viruses reproduce by injecting bits of their genetic material into a living cell, essentially reprogramming the cell so it reproduces the virus instead of itself. When it came to growing viruses—as with many other things—the fact that HeLa was malignant just made it more useful. HeLa cells grew much faster than normal cells, and therefore produced results faster. HeLa is a workhorse: It’s hardy, it’s inexpensive, and it’s everywhere. Today, it’s even possible for scientists to genetically alter HeLa cells to make them behave like other cells—a heart cell, for example. So being cancer cells isn’t the limitation most people expect that it would be, though there are some things you definitely wouldn’t use HeLa cells for, including any vaccine creation, since you wouldn’t want to inject cancer cells along with a vaccine.

In the 1950s when Henrietta’s cells grew, the concept of informed consent that we have today didn’t exist. People were routinely used in research without their knowledge. Scientists knew very little about the basic functioning of cells—they couldn’t have imagined that someday those cells would be valuable, that someday researchers could look inside them at Henrietta’s DNA and learn things about her and her children and grandchildren. It was a completely different mind-set than the one we have now, but it was not ill-intended or unethical by the standards of the day. George Gey, the scientist who first grew the cells, was 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 or anything else, including equipment he invented that’s still used around the world that could have made him large amounts of money. Gey was pretty impoverished, but he spent his own money in the lab. Taking cells from patients was absolutely standard practice worldwide in the ’50s. In many ways, it still is today.

The scientific community has been very open to learning the story of the HeLa cells. I think the general public often thinks that scientists feel there was something to hide in the story, but that’s not the case at all. I often hear from scientists who are very happy that this story is out there and being discussed.

No, nothing has formally changed in terms of the regulation of tissue research, but there is much more public awareness of the fact that research happens on tissues without consent, and there’s a public discussion about this on a much larger scale than has happened before. There also does seem to be a shift happening in the way questions about tissue-research ethics are being handled.

It’s important to be clear about the type of tissue research that does and does not require consent: If a researcher takes tissues specifically for research and the “donor’s” name is attached, federal law requires that researcher to get informed consent from the donor. But if the tissue is taken for some other purpose—a routine biopsy, or a fetal blood test—as long as the patient’s identity is removed from the sample, consent isn’t required to use the leftover tissue for research. You can read about the legal debate surrounding tissue research and the current state of the laws regarding consent and disclosure of possible commercial benefit in this New York Times Magazine story, in which I wrote about many of the legal cases mentioned in the book.

Several of those legal cases were still pending when the book was published—some of those have since been ruled on in ways that indicate the courts are leaning toward requiring consent. But as of the publication of the paperback edition of The Immortal Life of Henrietta Lacks, there have been no changes in the laws governing tissue research; so as of today there is still no requirement for consent for most tissue research, and the law as I described it in the book’s Afterword is still in place. You can learn more about one of these recently settled cases, involving the Havasupai tribe, and hear Rebecca discuss the status of these laws in this PBS segment below.

Not at all. I came to this book as a big believer in science and I remain that to this day. I think it’s essential that science not be done at the cost of research subjects, and I think it’s essential that researchers get informed consent for all of their work, but I believed that going into this book, so that didn’t change.

When you have a biopsy taken at a hospital you sign a form that says your doctor can dispose of your tissues any way he sees fit, or strip them of your identity and use them in research. The attitude has long been that everyone should allow their tissues to be used for the good of science, since the research can lead to medical progress—important drugs, vaccines, etc.—from which everyone benefits. But the thing is, not everyone does benefit in the United States, because we don’t have universal access to health care. There is an imbalance in this country, which means many of the medical advances coming from tissue research aren’t available to everyone, sometimes including those who provided raw materials for the research. That’s a pretty stark point in the health care debate. Bioethicist Ruth Faden wrote an op-ed recently about this very issue relating to HeLa cells. You can hear me talk more about this issue in this interview with Tavis Smiley.

I receive too many requests from hopeful writers to answer them individually. Please see the Writing Resources page of this site for my detailed tips on breaking into publication, becoming a science writer, and more.

I am not able to read materials and comment on them or offer help with getting them published. For those looking for guidance with their writing, I recommend looking into an MFA program, or contacting The Creative Nonfiction Foundation’s Mentoring Program, where you can have your manuscript evaluated by a professional writer and get help with publishing questions.

You can read about my work organizing my own book tour here, and you can read about the years I spent working to publicize the book (long before it was even published) here and here and here and here.

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,” even authors were telling me that book tours are dead, I just kept saying no, I just don’t buy it. I just had this very deep feeling that I needed to go out and talk about this book, because when people hear the story explained, they want to know. And when they’ve read the book, they have questions. They get to the end of the book and they want to talk about it. So much of the story is about the importance of communicating 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.

And the tour more than lived up to my hopes. Everywhere I go, events have been standing room only. People come who have read the book and people come who haven’t — they all have questions. The beautiful thing for me at these events and the book signings is hearing audiences responding passionately to the very issues that motivated me to write the book in the first place.

Being on the road doing endless book events is exhausting, but it’s also exciting, and I feel lucky to be able to do it. Especially now that the Lacks family often joins me on the road, and does speaking events of their own (learn more about that here).

I get many requests like this, and I’m not able to help authors organize their book tours. At some point, I hope to put together some tips for organizing a book tour, but until then, you can learn about how I organized my tour by reading this article I wrote for Publishers Weekly. (PDF).

I use a digital recorder and take copious notes when I’m interviewing. One tip is to ask “throwaway questions” … questions that you know the answer to or don’t care about the answer as a way to give yourself some breathing room to keep up during an interview, and to remember to catalogue scenic details. I often ask a question that I don’t need to know the answer to (though I record the answer, just in case), then I spend some time taking scenic notes: Write down what the person looks like head to toe, their mannerisms, and any other scenic details you can notice. Then I’ll ask other questions and catalogue the room: What it looks like floor to ceiling, what’s the weather doing, etc. Be specific—you never know what details you’ll end up needing. Interviewing is so mentally taxing just keeping up with answers while thinking up questions in response and taking notes, it’s easy to get to the end of an interview and leave and realize, you don’t even know what the person looked like. Blond hair? Glasses? Those are easy details to miss, so you have to remind yourself to always think in scenes and save the relevant information for yourself, and to buy the time to document it. Don’t be afraid to just say, “Hold on a minute, I have to scribble a bunch of notes….”

I suggest that anyone considering adopting the book for classroom or university-wide use visit the First Year Experience (FYE) page of this site to see information and comments from other schools that have adopted The Immortal Life. So far more than 60 schools have adopted it as their common read, and I hear amazing responses from students. I think one of the things that really makes The Immortal Life powerful for students is that the story is so personal for them. Everyone in the world has benefited personally from HeLa cells in some way, and there’s always a point in the book when readers realize this, whether it’s because they’ve gotten vaccines developed using HeLa cells, were conceived through IVF, or any number of other things. Students often tell me that their mother or father is alive because their cancer was treated with a drug made using HeLa cells … that they didn’t lose their parents in part because Deborah and her siblings lost their mother, and the world benefited from that. You can see a video on the above-mentioned FYE page of this site with students talking about their responses to the book.

I also suggest that anyone considering adopting the book visit the Teaching page of this site to see the many educational resources available to accompany it, as well as photos of students interacting with me and the book and with the Lacks family (who often come to school events with me or solo), and quotes from teachers about their experiences with it.

No. I’m amazed by the number of students who contact me with hopes that I will do their homework for them by providing answers to quiz questions, arguments for their papers, etc. I do not respond to those requests. My advice to those students: If you have not read the book, do so, then you should be able to complete the assignment just fine on your own. If you’ve read the book and you still need assistance, talk with your teacher, or visit your school’s writing/tutoring center and ask for assistance.

I often speak about my non-traditional educational path when I visit schools, because I hope it will help students who are struggling to find their own paths. Part of that story includes sage advice I got from teachers who helped me find my way when I was lost as a student. I wrote the story for UAB Magazine at The University of Alabama. You can read my response below:

I first learned about Henrietta Lacks and her amazing HeLa cells in a basic biology class when I was 16 years old. My teacher, Mr. Defler, wrote Henrietta’s name on the chalkboard and told us she was a black woman. That was it, and class was over.

I followed him to his office saying, “Who was she? Did she have any kids? What do they think about those cells?” He told me no one knew anything else about her. “But if you’re curious,” he told me, “go do some research, write up a little paper about what you find and I’ll give you some extra credit.”

At that point I was planning to be a veterinarian—something I’d been determined to do since I was a small child. I had no intention of becoming a writer. I looked for information about Henrietta but didn’t find anything, so I didn’t write that extra credit paper. But I never forgot about her—in fact, I was a bit obsessed by her.

More than a decade later, while working my way through a biology degree, I took my first creative writing class as an elective. (Amazingly, the school I went to counted creative writing toward its foreign language requirement, so I signed up just to fill a graduation requirement). At the start of that class, the teacher gave us this writing prompt: “Write for 15 minutes about something someone forgot.” I scribbled, “Henrietta Lacks” at the top of my page, then wrote an essay about how the whole world seemed to have forgotten about Henrietta, but I couldn’t—I was weirdly obsessed with her, and still wanting answers to those questions I’d asked my biology teacher so many years earlier.

I fell in love with writing in that class but still had no intention of becoming a writer. I had what I now refer to as Veterinary Tunnel Vision. The only thing I had ever imagined being was a vet, so I focused all my energy in that direction and never thought that other options might exist.

Then one day, when I was getting ready to submit my applications for vet school, my writing teacher pulled me aside and said, Do you realize you’re a writer? And do you know there’s such a thing as a science writer? I didn’t. He told me he thought the world needed more people who understood science and could convey it to the public. You know, he said, you don’t have to go to vet school just because that’s what you always planned to do—you could go to graduate school in writing instead. I told him I couldn’t imagine giving up on my dream of becoming a vet. Then he said these essential words: Letting go of a goal doesn’t mean you’ve failed, as long as you have a new goal in its place. That’s not giving up, it’s changing directions, which can be one of the most important things you do in life. The next day I started researching MFA programs in creative nonfiction writing. The rest, as they say, is history.

In 1988 when my biology teacher told me to see if I could find any information about Henrietta, neither one of us could have imagined I’d spend more than two decades working to answer a question he inspired in that classroom. When my book was done, I tracked down that teacher and sent him a copy with this note: “Dear Mr. Defler, here’s my extra credit paper. It’s 22 years late, but I have a good excuse: No one knew anything about her.” He was shocked. I was just one of thousands of students he’d taught in countless huge auditoriums, most of us (myself included) looking bored and half asleep. He didn’t remember that moment in class when he first told me about Henrietta, but I did. Which is the amazing thing about classrooms: You never know what random sentence from a teacher will change a student’s life.

These days I spend a lot of time talking to students about my path through school and how it led me to writing. My advice to them is this: Follow your curiosity. Don’t have tunnel vision. Take classes that interest you, even if they’re outside your major. When you hear things that make you curious, ask questions; follow that curiosity wherever it might lead you, and let yourself get swept away by it when it starts to take you in a direction you didn’t imagine going. If I hadn’t done that, I would be a veterinarian today, and I’d still be wondering who Henrietta Lacks was.

Please visit RandomHouse.com for instructions on requesting permissions.

Because of the large volume of speaking requests I get, I am not able to visit book groups in person or by phone or Skype, though I appreciate the interest. Please see the many resources on the Reading Group page of this site for enriching your discussions, including a reading group guide, links to videos of me answering frequently asked questions about the book, and links to a special features page, with audio and video footage related to the book (including actual recordings of scenes you read about in the book so you can hear the characters’ voices and scenes as they unfolded).

I travel worldwide speaking about my book and related scientific and ethical issues; I also teach writing workshops and give talks on a wide range of subjects at conferences and universities nationwide. Henrietta Lacks’s son, Sonny Lacks, and other members of her immediate family also travel extensively to speak about their story at universities and other institutions. I encourage all institutions interested in having me speak to consider having the Lacks family join them either with me or in my place, to tell their own story and answer questions about their experiences with HeLa cells, the book, and more.

To see if the Lacks family or I will be speaking near you, visit the Events page of this site.

If you would like to invite any of us to speak, please e-mail the details of your request to Miriam Feuerle at Lyceum Agency: miriam [AT] lyceumagency [DOT] com, or call her at 503.467.4621.

My teacher, the wonderful John Calderazzo, would be pleased by the number of emails I get asking for that quote. If you haven’t heard the full story behind the quote and how it helped change my career path, you can read the story by visiting the Students and Educators section of this FAQ and clicking on the 3rd question, which asks about my change in career path. You can also read a short essay I wrote on the subject online here.

For those who’ve heard me speak and are looking to be reminded of the quote, it is here:

“Letting go of a goal doesn’t mean you’ve failed, as long as you have a new goal in its place. That’s not giving up, it’s changing directions, which can be one of the best things you ever do in life.”

Yes, I have started working on my next book. I’m really excited about the topic, which is something I’ve been obsessed with much of my life, just as I was obsessed with HeLa cells (hint: It has something to do with animals). For me, that core of obsession is the first and most important criteria for writing any story. Click here for a detailed description of my next book.

There are many pieces of my writing available on the Articles page of this site.

Please visit the Contact page of this site for instructions.

If you have read the book and have a question you would like to see answered here, you can e-mail your question by visiting the Contact page of this site.