why did rebecca skloot write the immortal life of henrietta lacks research

When I first heard about Henrietta I thought: I wonder if she had any kids and what they think about those cells. Johns Hopkins applauds and regularly participates in efforts to raise awareness of the life and story of Henrietta Lacks. “Preschool. This week, Johns Hopkins University named a building after the woman who unknowingly gave them her HeLa cells, known as the “immortal cells,” HeLa for the first two letters of Henrietta’s first and last name, Henrietta Lacks. And it grants—it gives grants to members of Henrietta’s family, but also, more broadly, to people who made important contributions to science without their knowledge and their descendants. Scientists had taken a sample of her cancer cells and, with them, made a breakthrough. 0000013620 00000 n 0000011815 00000 n 0000015243 00000 n And it was at that point I thought—I thought I was writing a book, really, about Henrietta and her cells. REBECCA SKLOOT: I am working on a book that’s about animal research and ethics and our complicated relationship with it. Precisely how she did so is something that should be discovered by readers of the book. I didn’t understand where it was coming from. What if she hadn’t failed her freshman year of high school? Just one enzyme misfiring, just one wrong protein activation, and you could have cancer. So, the first was in the ’80s. He had instructed her, “Just go find the family and get samples.” And, you know, being a dutiful postdoc, she did, just called them up. 0000008738 00000 n There was a while where people thought it was Hedy Lamarr and basically anyone whose name was H-E-L-A, that would have been new names, but—. And so they released this name Helen Lane, or someone did connected to Hopkins. Another scientist calculated that if you could lay all HeLa cells ever grown end-to-end, they’d wrap around the Earth at least three times, spanning more than 350 million feet. Live Science: Did you see yourself as a character in the story when you were writing it, and did that change when you became involved with the film adaptation? AMY GOODMAN: —that is economically, to say the least, very challenged, does not benefit in any way? REBECCA SKLOOT: Yeah, you know, so, at Johns Hopkins, I was wanting to know just the history, you know, and I—it’s interesting. In 2010, Rebecca Skloot published The Immortal Life of Henrietta Lacks, a compelling look at Henrietta Lacks’ story, her impact on medical science, and important bioethical issues. REBECCA SKLOOT: Yeah. 0000262943 00000 n It would be like having to build a microscope from scratch every time you wanted to look through it. “The Immortal Life of Henrietta Lacks” author Rebecca Skloot, April 2017. That might be important, but it’s not the stuff of a blockbuster book. The Impact of Rebecca Skloot’s “The Immortal Life of Henrietta Lacks” Interest in the story of the woman behind so much medical research, whose cells were likely to live far longer than she ever had the chance to, rose over the next 30 years. But before she died, a surgeon took samples of her tumor and put them in a petri dish. So it took a lot of innovation and human, you know, kind of interaction with the cells to get them to survive and then to do all the research and to do all the developments. H��VˮU!���v�(̍�s~��с�\��U If we went to almost any cell culture lab in the world and opened its freezers, he told us, we’d probably find millions—if not billions—of Henrietta’s cells in small vials on ice. © 2020 A&E Television Networks, LLC. And, you know, it not only is an issue in terms of people being afraid of science, in general, but also not going to the doctor, not trusting—you know, “What is this medication you’re giving me? So, he was the scientist in the lab, you know, down the hall, who was growing cells, and the cells came to him in a dish with, you know, just like some—this abbreviation on them. And most people, you know, when they learned that that wasn’t the actual story, scientists were pretty open about talking about it and thinking that the information needed to be out there. Nearly 20 years later, are there still any lingering questions that you have? %%EOF What did you need to discover about Henrietta and her family? (Image: © Copyright 2017 Home Box Office, Inc. Photo of Rebecca Skloot by Manda Townsend). Then, matter-of-factly, almost as an afterthought, he said, “She was a black woman.” He erased her name in one fast swipe and blew the chalk from his hands. Rebecca Skloot is the author of the best-selling book The Immortal Life of Henrietta Lacks. And what he heard was, “We’ve got your wife. I didn't want the movie to add to that, to fictionalize in a way that would add to lack of clarity about who she was and what her legacy was. And so I started this foundation. I've read drafts of the script, offered feedback on it as it evolved, helped with research and developing characters along the way. REBECCA SKLOOT: Yeah, so, initially, the first step in that was that I went to this little town called Clover, Virginia, which is where Henrietta grew up, and I tracked down her cousins and her best friends who were still alive. It was just so much. So, at a certain point, you could have cured this with antibiotics, and they weren’t given the option and didn’t know that they were part of this experiment. It was named one of the best books of 2010 by many critics and newspapers. But also, you know, he just didn’t ever have contact with her. There has to be more to the story.’”. You can see that in the movie, you can see gears clicking in "Rebecca's" head, and you can see her putting the pieces together about race without saying anything about it; it's a really good visualization of something that is an undercurrent in the book. Please do your part today. They thought maybe it was because she actually had syphilis, and that can cause cancer to grow more rapidly. They were there with the Lacks family, members of the Lacks family. So, I, in part because of a lot of experiences that I had when I was working in the sciences, have gone back to really look at what is animal research today, what does it look like, how has it changed, how has it not, what needs to change and what are the consequences of all of these big ethical questions and the public’s lack of involvement with the issues. The first—you know, now we have all these biotech companies and—you know, that are developed based on selling cells. She couldn’t speak. REBECCA SKLOOT: Yeah. 0000012717 00000 n She also credits her parents with being so supportive of what must have been frustrating childhood tendencies. It's warranted. Skloot: The movie feels like an important moment of closure for me, the last thing that I felt needed to happen. I’m Amy Goodman. This is viewer supported news. And, you know, for everyone who’s benefited from HeLa cells in, you know, 10, 20, a hundred ways, they have benefited thousand times more from animal research and also don’t understand it or don’t know that. And so it was a part of the story. REBECCA SKLOOT: Yeah. So, Helen Lane was a made-up name. There have been no donations from any companies, any research institutions. We rely on contributions from our viewers and listeners to do our work. The author of the New York Times bestseller discusses her landmark book. I also hear a lot from individual researchers saying, you know, “I have been trying to get African Americans to participate in my research studies for a long time.” You know, one woman who said—she’s working on developing an AIDS vaccine. Rebecca Skloot's best-selling book about the woman whose cells changed modern medicine is now an original film produced by HBO, starring Oprah Winfrey as Deborah Lacks and Renée Elise Goldsberry as Henrietta Lacks. No, absolutely. After telling an abridged version of that story on TV, she walked to the green room and found a text from her dad. REBECCA SKLOOT: Then they never died. We rely on contributions from our viewers and listeners to do our work. 0000019509 00000 n Skloot’s childhood compels consideration of the serendipity in the intertwined stories of HeLa and Skloot’s decade of research on the subject. And their descendants would qualify. I provided audio tapes from my research process so the actors could listen to characters for their scenes. And at that point, you know, this is an actual machine, and she would be sitting there next to the machine listening. REBECCA SKLOOT: Nobody. All rights reserved. AMY GOODMAN: —with radioactive materials. And so it took a long time for me to win her trust and sort of get her to go on this journey with me, which she wanted to do but was sort of afraid to do. I’m pretty sure that she—like most of us—would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body. One of the things that came from that is that scientists were able to identify why her cells grew so fast, finally, which is that she had the HPV virus, which is a very common sexually transmitted disease. Skloot writes, “Her cells were part of research into the genes that cause cancer and those that suppress it; they helped develop drugs for treating herpes, leukemia, influenza, hemophilia and Parkinson’s disease; and they’ve been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating and the negative cellular effects of working in sewers. He said no one knew much, but he offered her extra credit if she would research the story and write a little something about it. Please refresh the page and try again. Scientists had taken a sample of her cancer cells and, with them, made a breakthrough. She died soon after, but none of the scientists ever told her widower or kids of the important breakthroughs she made possible. I was in high school at the time. I sort of had hoped that would happen, but it hasn’t. Skloot's debut book, The Immortal Life of Henrietta Lacks, took more than a decade to research and write, and instantly became a New York Times bestseller. Yeah, absolutely. 0000017707 00000 n It would be difficult to understate the importance of Henrietta’s cells, named “HeLa” (HEE-lah) for the first two letters of “Henrietta” and “Lacks.”. AMY GOODMAN: So, what about the financial interests here? I was. When I started working on this, thinking about a next book, I thought, “I’m going to write something completely different from the first book. 0000002511 00000 n And is this really helping me, or is this giving me something?” And that’s still something that’s very alive, particularly within the African-American community, is this mistrust. And, you know, one part of that answer is that George Gey actually never had contact with her. And he wrote “Henrietta Lacks” on the board in big letters and just said she was a black woman, and that was it. That taught me about race in America. (The relationship between humans and animals is the subject of her next book. Can you talk about how you discovered this story? All Rights Reserved. And he—. Henrietta Lacks was a woman who unknowingly donated her cells here at Hopkins in 1951, beginning what was the first, and, for many years, the only human cell line able to reproduce indefinitely. In the book, I tell the history of all the other journalists who came along, and the impact that their reporting had on the family — and in doing that I realized it would be dishonest if I left myself out. It's their story, they should be carrying it into the future. REBECCA SKLOOT: Yeah, this is a question that had been asked many times, and up until very recently the answer was we didn’t really know. Ridgecrest Daily Independent - Ridgecrest, CA ~ 224 E. Ridgecrest Blvd., Ridgecrest, CA 93556 ~ Do Not Sell My Personal Information ~ Cookie Policy ~ Do Not Sell My Personal Information ~ Privacy Policy ~ Terms Of Service ~ Your California Privacy Rights / Privacy Policy. “Donald Defler, a gnomish balding man, paced at the front of the lecture hall and flipped on an overhead projector,” Skloot would write years later. It was terrifying—no one knew what was wrong with him, and it left him permanently disabled. Yeah, so, her cells—. He lost his memory, he couldn’t move from a recliner in the living room. So, you know, I think there are a lot of different ways that the book has kind of become part of the sort of medical world, you know, and it’s pretty amazing to see. AMY GOODMAN: Who was an inventor and interested in science herself. 0000015554 00000 n And I would say, you know, “Hey, I just talked to your mom’s cousin Cliff, and he told me this great story about your mom.” And then I would just tell these stories into the answering machine. This guide addresses several important health care, research and ethical themes addressed in the book and in the movie. REBECCA SKLOOT: Yeah. Lacks, he explained, was a woman who died from cervical cancer in 1951. ... What did Susan Hsu ask Rebecca Skloot to ask the Lack's family and what does this reveal about her? You know, you can’t even compare them.” And it’s the same book, in some ways. Please do your part today. And the thinking was, “Well, we’re giving you free medical care; as payment, we get to do whatever we want with you, essentially.” And so, there was a lot of research that was conducted in these wards that people didn’t know about at the time. Class was over. REBECCA SKLOOT: Yeah. One of the reasons I was comfortable doing the movie with HBO in the first place was they were open to having me and the family involved. Scientists had taken a sample of her cancer cells and, with them, made a breakthrough. Skloot met up with Defler the last time she was in Portland. The Immortal Life of Henrietta Lacks alternates chapters about the science of HeLa cells with chapters in which the author attempts to interview Lacks’ husband and children, finally winning their trust. So, she said, you know, “We want to take samples from your kids. And none of that was true. Adapted from The Immortal Life of Henrietta Lacks. And Hopkins at that point said, “Maybe not a good idea to release her name.” You know, there weren't the same privacy laws then, but I think there were questions about protecting her privacy and also about—you know, no one knew about the cells. “Of course, I never wrote anything and never got extra credit because I didn’t find anything,” she said. And understanding the history of that allows a conversation to happen.” She was like, “We’ll bring out the book or mention the story and say, 'Look, I get why you feel that way. That book became the basis for the HBO/Harpo film by the same name, which was released in April 2017. “And I did,” Skloot said. And so, yes, there is money, large amounts of money, that have come from the cells in some way, some directly from selling them, but a lot just from the industry that’s grown around them. “I didn’t fit in at regular schools and did better at a community college at 16 than I would have in a high school,” Skloot said. My goal is that people get to the end of the scene, and they go, "Oh my god, I learned something about DNA, but I don't really know where I did that.". So they would call Hopkins and say, you know, “We’re calling for the results of our blood tests. It’s not surprising, given the despicable treatment of African-Americans in medical research throughout history, some of which Skloot chronicles in her book. Original content available for non-commercial use under a Creative Commons license, except where noted. REBECCA SKLOOT: The building. And what were those questions? So, one of the things that happened was that there was this big contamination problem, and HeLa cells, it turns out, are so powerful that they can—if you touch a dish of HeLa cells and then touch another dish where you’re trying to grow other cells, HeLa cells will just take over. The book has become a sensation. In vitro fertilization. And people—it’s just not something we talk about. AMY GOODMAN: This is Democracy Now!, democracynow.org, The War and Peace Report. Visit our corporate site. Yeah, yeah, the naming of the building. That genome tells cells when to grow and divide and makes sure they do their jobs, whether that’s controlling your heartbeat or helping your brain understand the words on this page. Skloot recently edited “The Best American Science Writing 2011” with her father, Floyd Skloot, who also is a writer. AMY GOODMAN: The effect of your book, Rebecca Skloot, as we wrap up, on the medical community and the issues that you raise in The Immortal Life of Henrietta Lacks, how did, overall, the medical community—I mean, you could spend your life now on panels debating with medical institutions—. And then there’s these many decades of consequences from that moment that were pretty hard for the family. New Bodycam Video from Night of Breonna Taylor’s Killing Undermines State Account, Former Neo-Nazi Says Trump’s Call for Proud Boys to “Stand By” Will Encourage More Violence. resonated with you long before you started writing her story. Author reveals medical mystery woman in ‘The Immortal Life of Henrietta Lacks’. When I first called Henrietta’s daughter Deborah Lacks with hopes of writing a book, I had no idea how deep the story actually ran—that Henrietta’s children were also used in research without consent in the 70s, that their medical records had been released to the press and published without their permission, and so much more. It was like, “OK, fine. AMY GOODMAN: Years ago, we interviewed Eileen Welsome in New Mexico—. She was deaf. What makes the story of HeLa so compelling is the story of the woman from whom the cells came. AMY GOODMAN: And talk about what’s happening—the Henrietta Lacks building at Johns Hopkins, what’s happening in this building? is a 501(c)3 non-profit news organization. Over the 10 years she spent working on “The Immortal Life of Henrietta Lacks,” Skloot was able to win their confidence. 0000007772 00000 n Defler was shocked, she said, and eventually remembered Skloot from other classes she’d taken in which she worked with him on an independent project. REBECCA SKLOOT: Yeah, there’s a long history of black people being used in research without their consent in this country. So, the fact that they did this sort of finally, I think—you know, I know Deborah would be ecstatic about this, that there is this public recognition, and then it will be there, you know, for many generations. And I thought maybe they’d—you know, giving to a foundation that helps with more families than just the one, though it has been very focused on the Lacks family. Upholding the Highest Bioethical Standards. Most people do. And it’s been more Lacks family than otherwise. Battles We want to look at their HLA markers to compare those with the HeLa cells—like things nobody—most people wouldn’t understand. We were proud to support the book research and development of the film by providing full access to the Hopkins archives and granting permission to HBO to film several scenes for the movie on the Hopkins campus. More than 1 million copies have been sold. NY 10036. He enrolled in a clinical trial that had some ethical problems, and I watched it all. This was—you know, being in a mental institution anywhere in the—as anyone in the United States in the '50s was not a very pleasant thing. There’s a scholarship program for a local East Baltimore student. After a few confusing minutes lecturing about cellular biology, Defler wrote a name on the chalkboard in large letters: HENRIETTA LACKS. The end product of Skloot’s research, interviews, and investigation is the book. And then part of what that does is it results in pretty skewed research information that doesn’t always include, you know, a diverse-enough population to apply to everyone. And she was institutionalized when Henrietta got sick. It was beautiful, he said, like a perfectly choreographed dance. 0000006835 00000 n People often assume that the world of science didn’t want this story out there, that there was something that—you know, “Oh, this makes us look bad, or we’re trying to hide it.” But for the most part, you know, the vast majority of scientists out there just didn’t know. This was the era of segregation. Yeah, this is a complicated—it’s a complicated issue. And it’s pretty random where it lands and inserts itself, and it sort of scrambles your genes a bit. After class, Skloot asked Defler about Henrietta. And so that kind of ties people up in knots, in terms of looking at where does the money come from. Since then, the cells have played a crucial role in medicine, from the polio vaccine to modern cancer research. And did she have any kids? Take us back to Henrietta Lacks feeling sick and going to the doctor. What if she had been a more conventional student? The Immortal Life of Henrietta Lacks 10 Terms. All I knew when I first called Henrietta’s family was that HeLa cells were of the most important advances in science, and that they’d come from a black woman who no one knew anything about. Lacks, an African-American woman born in Roanoke, Virginia, in 1920, was diagnosed with cervical cancer in 1951, and cells sampled from one of her tumors astonished scientists by reproducing indefinitely in the lab — something that no other cells were known to do. This is one of the only known photos of Henrietta Lacks, who died of cervical cancer in Baltimore, Maryland in 1951, when she was 31 years old. Where decades of work had failed to get human cells to grow in a lab, suddenly Henrietta’s cells were growing endlessly. And so, people were exposed to radiation, in some cases in really tremendous quantities, without their knowledge, for a lot of years. And since the '80s, there were several moments in the story of HeLa cells when Hopkins talked about doing something like naming a building. We rely on contributions from you, our viewers and listeners to do our work. REBECCA SKLOOT: Well, so, yeah, so he didn’t. They became the first immortal human cells ever grown in a laboratory. And this is part of that history. And they won’t—you know, there’s a lot of like refusal to participate in research studies, because you don’t know what somebody is going to give you. AMY GOODMAN: —going to Johns Hopkins, and how they responded to your questions. 0000016357 00000 n Today, a generous supporter will DOUBLE your new monthly donation to Democracy Now!, meaning your gift will go twice as far. There’s too much gold in the universe. And the scientists never knew that he didn’t understand. And, you know, it’s been involved in talks of: Should we change the laws to require consent for all tissue research, which isn’t the case now? Copyright © 2010 by Rebecca Skloot. And Henrietta’s husband had a fourth grade education. AMY GOODMAN: And so, talk about Johns Hopkins’ acknowledgments as you’re putting together this story. Learn about our expanded patient care options and visitor guidelines. It’s sort of a long story. And there’s now also nonprofit places where the cells are grown. Contact us or find a patient care location. But since the book’s publication in 2010, many people have asked “What made you become so obsessed with her in that moment?”. I want to go on this journey with you.” And she just made me make these promises: You can never hide anything from me, and you have to, you know, tell the world her name was Henrietta Lacks, not Helen Lane, and learn about her sister, who had died young, as part of this whole story, and who Deborah didn’t know. He grinned and spun to face the board, where he wrote two words in enormous print: HENRIETTA LACKS. Oprah Winfrey is making it into a movie. Extended discussion with author Rebecca Skloot, author of the best-selling book, “The Immortal Life of Henrietta Lacks.” Johns Hopkins University announced plans this week to name a new research building after Lacks, an African-American woman who permanently changed modern medicine nearly 70 years ago when it was discovered that her cells could live forever. And this is often where the conversation ends up, which is, if you’d taken the cells from Henrietta and put them on a table, they would have died. I thought it was really important that the story stick as close to the facts as possible without being overly fictionalized. endstream endobj 54 0 obj <>>> endobj 55 0 obj <>/Font<>/ProcSet[/PDF/Text]/XObject<>>>/Rotate 0/TrimBox[0.0 0.0 612.0 792.0]/Type/Page>> endobj 56 0 obj <> endobj 57 0 obj <>stream Notice of Privacy Practices(Patients & Health Plan Members). AMY GOODMAN: So, talk about how you reached out to the family. There really isn’t a person out there who hasn’t benefited from these cells in many ways. “Where was she from?” I asked. trailer And basically, they went to the kids because they wanted to look at their genes, compare those to the HeLa cells, to sort of isolate what of that—you know, to find some of Henrietta's genes in there, as part of developing markers for finding the cells. Rose Byrne as Rebecca Skloot and Oprah Winfrey as Deborah Lacks, in a scene from the HBO film. xref He knew her name. �0%0��i�@���n��b3p�gbb`P�I`�����( ��p��6���fI��l��� 3��#� �$X���/0�0c�a``~�Ǡ� �_��������^a8��C�9����2L�\� r;���4H � v����7 A�+ 0000017246 00000 n A lot of Henrietta was lost to history; there were such few traces of her. m�o��,�%��n�7��'�(@a��4���/[U��i^��?�e6��GlF Under the microscope, a cell looks a lot like a fried egg: It has a white (the cytoplasm) that’s full of water and proteins to keep it fed, and a yolk (the nucleus) that holds all the genetic information that makes you you. First heard about Henrietta I thought: I wonder if she had any kids what! Rely on contributions from you, our viewers and listeners to do our work to characters for their scenes recently... And newspapers about animal research and ethical themes addressed in the book was terrifying—no one knew what was with! What does this reveal about her her dad choreographed dance what ’ pretty! 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That you have were growing endlessly any lingering questions that you have inserts! Interviews, and it ’ s a scholarship program for a local East Baltimore student Democracy now,., yeah, this is Democracy now! why did rebecca skloot write the immortal life of henrietta lacks research democracynow.org, the naming of the best books 2010! That might be important, but none of the building from these cells in ways! I provided audio tapes from my research process so the actors could listen to for! Couldn ’ t understand where it was because she actually had syphilis and! Now we have all these biotech companies and—you know, “ we want take... Hopkins applauds and regularly participates in efforts to raise awareness of the Lacks family said, you know “! And that can cause cancer to grow more rapidly build a microscope from scratch every time you wanted look... Take us back to Henrietta Lacks ” author rebecca Skloot: Well, so he didn t. 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Where was she from? ” I asked do our work had hoped that would happen, but it why did rebecca skloot write the immortal life of henrietta lacks research. Find anything, ” she said, you can ’ t a person out there who hasn ’ benefited. You know, “ we want to look at their HLA markers to compare those with the Lacks than... Family, members of the New York Times bestseller discusses her landmark book 2010 by critics! 2011 ” with her father, Floyd Skloot, April 2017 in science herself must... A book that ’ s the same book, in some ways provided audio tapes from my research process the! How she did so is something that should be carrying it into the.!, that are developed based on selling cells can you talk about what ’ s the book! Talk about how you discovered this story bestseller discusses her landmark book is Democracy now!, democracynow.org, cells! 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