Henrietta Lacks Author Rebecca Skloot Answers Your Questions

Currently on a book tour to promote the paperback release of The Immortal Life of Henrietta Lacks, author Rebecca Skloot made time to reply—at length and with great thought—to your questions.

From discussion leader Erin Henry:

I thought you did a great job of presenting both sides of the tissue rights debate fairly and objectively. Was this a struggle for you? Did you find that it was hard to keep your personal stance out of the book?

I changed my mind about the issue of tissue rights multiple times while reading your book. Did you have a similar experience will writing and researching it?

I take that as a compliment, so thank you. One of my goals with writing this book was to really show people how complicated this issue of tissue rights is. In the past, the science and scientists in this story have been demonized—I thought it was very important to show that there are human beings behind every biological sample in a laboratory, but that there are also human beings behind every scientist. One of the reasons I structured the book the way I did—jumping around in time and between the story of the science and the story of the family—is because I wanted the two stories to inform each other. I often hear people saying that their opinions about the ethics and science flip-flopped as they read—that was exactly what I hoped would happen. If there was an easy answer to the question of what to do about tissue rights, experts wouldn’t have been arguing for more than a decade about how to handle the questions raised by the book.

It wasn’t hard for me to maintain that balance and keep my own personal stance out of it, because my personal stance is that balance is essential in talking about how to move forward with tissue research. I came at this story from what I now realize was a unique perspective: I was trained as a scientist before becoming a writer, so I reported this story as someone who believes strongly in the importance of science. But I’m also the daughter of someone who was a subject in a research study (my father was very sick when I was younger, and was involved in a research study as a patient—to read more about that, see this question on the FAQ page of my website: “Q: What sparked your curiosity about the woman behind the HeLa cells and made you devote more than ten years of your life to writing this book?”). So I came to this story believing very much in science, but also in the importance of bioethics. People often ask my opinion about tissue research, whether I think it’s important, whether I would donate tissues, and if my opinion about that changed in the process of writing this book. It didn’t. I have always known that tissue research is incredibly important for the future of science and medicine, and I believe it’s important to donate tissues. When I go to the doctor, I sign the forms saying they can save my tissues and use them in research. But the key is, when I sign those forms, I’m giving informed consent because I know what it means to sign those forms … most people in the United States don’t.

This was definitely my favorite read for 2010 and I especially admired the research Ms. Skloot did on the subject and the family. Have any members of Henrietta’s family presented to date with the credentials necessary to qualify for the educational scholarships you are setting up? If so, which ones and please give the details.
Thank you for taking questions.

Virginia

Posted by: Virginia Ober| Friday, April 15, 2011 at 02:40 PM

Thanks for the kind words about the book, Virginia. To answer your question: Yes, I set up The Henrietta Lacks Foundation, which is now officially a 501c3 nonprofit charity, in January of 2010. You can learn more about the foundation and its mission on the foundation’s website. So far the foundation has given out eight 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. It has also provided grants for medical and dental assistance for Henrietta’s children and grandchildren. You can learn more about some of the specific grants given out to date in this recent New York Times article about the foundation.

From discussion leader Erin Henry: Are you still in touch with the Lacks family? Do you know how they have reacted to your book?

I do stay in close contact with the family. 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 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. Naturally some of the book was painful for Henrietta’s children to read, but they’re pleased that the story is out there getting such a wide public response; they’re also happy to finally know about all of the amazing science that Henrietta’s cells contributed to, which they are very proud of.

The Lacks family often comes to public events where I speak about the book—sometimes they just sit quietly in the audience and listen, other times they stand up and answer questions or give talks themselves. Without fail all the audiences at those events meet the family with cheers and standing ovations. People thank them for Henrietta’s contributions to science and share stories of how they personally benefited from her cells. Scientists often stand up and say things like, “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 the enormous public response to the book has been positive for the family, that there’s been some healing through that process for them.

Henrietta’s family also keeps up with the media coverage and comments people post on blogs and Twitter and on the Henrietta Lacks fan page on Facebook. Readers often send notes of thanks to the family and share incredible stories of how Henrietta’s cells changed their own lives … stories like, “I was diagnosed with stage IV cancer ten years ago, but I’m still alive today thanks to drugs made using Henrietta’s cells”… “I did my PhD dissertation research on Henrietta’s cells that allowed me to develop this important drug, or this important diagnostic test” … or “My mother was diagnosed with cancer when I was a young girl, and I didn’t lose her because she was saved by a drug that HeLa cells helped develop. I’m sorry that you had to lose Henrietta in order for my family and so many others to benefit from her cells.”

Hearing responses like that means a lot to them. The Lacks family is very proud of the cells, and I think they feel that Henrietta would be too, that she’d be happy that her cells have helped so many people. But financially, nothing has changed for the Lacks family. They’re still living in poverty, still unable to afford health care and hoping that they’ll see some sort of benefit from the business side of the HeLa cells.

As a follow-up, people often ask whether any biotech companies that sell HeLa cells have given the family money. The answer is that no research institutions, universities, or companies have given money to the Lacks family, 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 my site, particularly this interview with Tavis Smiley.

I loved this book as well. It was a fascinating read. As a journalist, one thing that really stood out to me was how Skloot really became a focus in her own story. I’m curious if she was also surprised by this or if she expected it. Also, did she struggle with writing her personal experience as part of the book? Thank you again for hosting the read-along, wonderful book!

Posted by: Melissa| Friday, April 15, 2011 at 04:14 PM

Oh yes, it definitely surprised me. 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 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. 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. And, yes, because of all that, writing the parts of the book that included me as a character was very hard.

My question for Miss Skloot is simple: What was the most troubling part of the book writing and research experience for you? Also what scientific/moral quagmire are you going to tackle next? I can’t wait to see what’s next from you. You have a talent for making science interesting!

Posted by: Ashley | Friday, April 15, 2011 at 08:24 PM

The most 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. It was troubling because 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 because of this issue I mentioned above—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—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 … neither of us realized going in how physically dangerous that trip really was for her.

As for what’s next: It’s funny, when I finished this book after working on it for more than a decade, I felt like I would never be able to type the word “HeLa” again … but HeLa cells are HeLa cells—they have a tendency to spread and take over. And they’ve definitely taken over my life in the same way they’ve taken over research labs. Right now, I’m working on a new version of The Immortal Life of Henrietta Lacks for young readers (ages 10-15 … it’s scheduled for publication in January 2012, and you can keep tabs on it here if you’re interested). The Immortal Life is also being adapted into a film coproduced by Oprah Winfrey and Alan Ball for HBO, and I’m a consultant on the film, so I’ll be working on that, as will the Lacks family—they’re consultants as well, which they’re very excited about.

In the midst of all of that, I am starting to work on my next book, though I haven’t gotten to a point where I’m actually talking about it much. I’m really excited about my next book 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. And the one after that will likely be related to the story I mentioned above, about things I learned while researching Deborah’s sister’s story in the mental institution). For me, that core of obsession is the first and most important criteria for writing any story.

Thank you for all of your great questions. You can find lots of special features related to the book on my website, including additional photos not included in the book, videos, audio clips of scenes in the book as they happened, and more. Please visit my site and join the conversation about HeLa and The Immortal Life on The HeLa Forum and Readers Talk pages.

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