FAQ
For Skloot’s answers to frequently asked questions about her book, The Immortal Life of Henrietta Lacks, check out the numerous radio and television interviews available on the press coverage page of this site. Below you will find a list of most commonly asked questions and answers about writing, and The Immortal Life. This page will be periodically updated with new questions:
Q: Is The Immortal Life of Henrietta Lacks going to be made into a movie?
Yes. Oprah Winfrey and Alan Ball will be producing the film version of The Immortal Life for HBO. More information about the movie online here.
Q: How has the Lacks family reacted to the book?
Henrietta’s children and grandchildren read the book 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 factual things that needed fixing. For Henrietta’s children, naturally some of the book was painful to read, but it was also good for them to read about all of the amazing science that Henrietta’s cells contributed to, which they feel very proud of. For the younger generations of Lackses, it was a way to learn about their history: their family didn’t really talk about what happened to Henrietta or her children. So the younger generation didn’t know much (if anything) about Henrietta or the cells. They didn’t know what Henrietta had contributed to science, they didn’t know what had happened to their own parents. So finally having the full story has helped make sense of their history — they’re also filled with pride about all that Henrietta’s cells have done for science.
The Lacks family came to a lot of my public events when the book came out — they’d stand up in a room to answer questions, and the crowd would cheer and give them standing ovations. Scientists often stood 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 would stand in long lines waiting for their autographs. The enormous public response to the book has been great for the family — there’s been some healing through that process for them.
Q: How has the Lacks family benefited from your book? Do they get some of the proceeds from the book?
The family has benefited from the book in several different ways, including the closure and thanks from scientists that I mentioned above. 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. So I set up The Henrietta Lacks Foundation. I’m donating a portion of the book’s proceeds to the foundation, which is open for anyone else to donate to. It’s been in existence since January 2010, and so far donations have come in steadily, ranging from $1 to about $500, with the average being in the $50-$100 range. These donations are from the general reading public and from individual scientists who used her cells and feel like they want to do something for the family. My hope is that biotech companies and scientific institutions that have benefited from HeLa cells will contribute to it as well. So far, that hasn’t happened. These organizations will likely not ever give money directly to the Lacks family, for fear of setting a precedent that would mean they’d have to give money to the millions of other people whose cells have been used in research. But perhaps donating to a foundation in Henrietta’s name will let them recognize Henrietta’s contribution to their companies. Among other things, the foundation will provide scholarship funds for descendants of Henrietta Lacks, so they can get the education that Henrietta and her family didn’t have access to but desperately wanted. It also aims to help provide health care coverage for Henrietta’s children. As funds allow, I hope to expand the foundation to offer, for example, scholarships to African American students in need who are deaf or hard of hearing, as Henrietta’s children were.
Q: How do I donate to the Henrietta Lacks Foundation?
Visit the Foundation’s website to find more information, and instructions for donating either online or via postal mail.
Q: Can I donate directly Lacks family instead of giving to The Henrietta Lacks Foundation?
Yes. The Lacks family has set up their own website, with information about how to donate directly to them.
Q: I am a writer with a new book coming out and I’d like to organize my own book tour, how did you organize yours? Can you offer me tips or help me organize my tour?
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).
Q: I am a writer/want to be a writer, can you offer me career advice/tips for breaking into publication/help with my writing?
I receive too many requests from hopeful writers to answer them individually. Please see the Writing Resources page of my website for my detailed tips on breaking into publication, becoming a science writer, and more.
Q: Can I send you something I wrote and get your feedback on how I can improve it/get it published?
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.
Q: How did you first become interested in Henrietta Lacks and the HeLa cells?
I first learned about Henrietta when I was sixteen and in a basic biology class. My teacher mentioned HeLa cells, saying they were one of the most important tools in medicine, then almost as an aside, he said “They came from a woman named Henrietta Lacks, and she was black.” That was the moment I became obsessed with Henrietta. After class I asked whether her family knew about the cells and what her race had to do with them being alive, but my teacher said no one knew anything else about her, just her name and her race.
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 with 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, and the first questions I asked him were, Did she have any kids? How did they feel about her cells being used in research? And what did the fact that she was black have to do with it all? I think I asked those questions because I was a kid wrestling with watching my own father being a research subject.
Q: Why are Henrietta’s cells still alive? Why didn’t they die like all the other cells before them?
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 your 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.
Q: If HeLa cells are cancer cells, how are they useful for research into anything other than cancer, like vaccine production?
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’ve turn 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 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.
Q: Within the first three chapters, you become a character in this book. At what point in the course of your reporting did you realize you would include yourself in the story, and why?
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, saying, “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, saying, “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. 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.
Q: It took ten years to write this book. What is it like to report a story for a decade? Did you expect it to be such a long process?
It’s amazing and it’s exhausting to work on a book over such along 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 ago, 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 a logistical and organizational nightmare. 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 what of that 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.
The other 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 above. When I started working on this book, I thought it was going to be a book about the 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.
Q: The structure of your book is complex, how did you come up with it?
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.
Q: Why was the existence of the HeLa cells so difficult for Henrietta’s family?
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 like, “what is a cell?” and “What does it mean that Henrietta’s cells are alive?”). This was very frightening, particularly for 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 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. 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 were particularly very angry when they learned that people were buying and selling Henrietta’s cells, which helped launch a multi-billion dollar industry, yet her family had no money. To this day, they can’t afford health insurance.
Q: Why is the story of Henrietta Lacks important?
It’s important for a lot of reasons, but perhaps the most central one is that we’re at 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 important 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 them to be commercialized. The story of Henrietta, her family, and the scientists involved put human faces on all of those issues, which can be pretty abstract otherwise.
Q: What messages should readers take from the story?
Well, 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 we all use in research every day. I can’t count the number of emails 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 important take-home messages.
But this is also a story about the fact that there are human beings 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.
Q: Was it wrong for the scientists to have taken Henrietta’s cells?
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 grand children. It was a completely different mindset 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 in the 50’s worldwide. In a lot of ways, it still is today.
Q: Is this story particularly important for black readers?
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 multi-billion 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 commercialized by others). In 1951 when Henrietta showed up at Hopkins, taking tissues from patients without consent had been standard practice for decades. Henrietta’s sample was 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 at the time 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.
Q: Why did you choose to render the dialogue of the Lacks family in specific dialect?
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. One that stands out for me, for some reason: one of Henrietta’s cousins was describing one of Henrietta’s young love interests, a big, burly guy, and she said he’s “an over-average man.” I could never have come up with that as a description, but it’s so perfect.
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.
Q: Is the Lacks family still angry about HeLa cells?
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.
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 Hopkins and the many companies that have profited off of HeLa cells will do something to honor Henrietta and recognize what her family went through.
Q: From your afterword on tissue banking and cell culture laws, it really sounds like the same thing could happen today but without the name attached to it.
It happens every day. Most people have tissues on file somewhere. Although we don’t realize it, a lot of us have signed consent forms. When you go in for a biopsy, it says “You can dispose of my tissues any way you see fit or use them in research.” People don’t realize what that means or that it could become commercialized.
There is no standard practice when it comes to consent. In some cases people collecting tissues give people big thick brochures explaining what tissue culture is, why it’s important to donate, etc., but others just provide generic forms patients sigh saying, essentially, “you can dispose of my tissue however you want.” There is no standard or legal requirement for obtaining informed consent for research on most tissues. Most federal guidelines governing research on human subjects don’t apply to tissue research because either the identity is stripped or the researcher didn’t have contact with the person first hand, so it is not considered human research.
Q: How does the story of HeLa and the Lacks family relate to today’s health care debate?
The thinking in science has always been that everyone should participate freely in tissue research — giving freely of their cells and tissues — because it helps medical progress. 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, those tissues are stripped of your identity and used in research. The attitude has long been that everyone should allow their tissues to be used for the good of science because everyone benefits, since the research leads to important drugs, vaccines, etc. 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. It’s online here.
Q: Why did you organize your own U.S. book tour, and what was it like to do a full four-months of book touring?
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. 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.
And the tour more than lived up to my expectations. Everywhere I go, events have 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. It’s exhausting, but it’s so exciting at the same time.
Q: How do I request permission to distribute an excerpt from The Immortal Life of Henrietta Lacks to my students as part of a class.
Please visit this site for instructions on requesting permissions.
Q: What if I have a question that isn’t answered here?
If you have read the book and have a question you would like to see answered here, you can email your question by visiting the Contact page of this site, or you can post your question in the comments section of this blog thread: “Skloot Launches FAQ Blog Series Answering Reader Questions About The Immortal Life of Henrietta Lacks.” They will be compiled here as she answers them.
