World Book Night! (First year for US give-aways!)
I volunteered for World Book Night this year, and I just picked up my books today! So excited! I'm giving away The Immortal Life of Henrietta Lacks, since it's rather a perfect intersection of social justice and science geekery for me. Monday I'm going to take RTA to work and give the books away on the bus/train.
Also, bonus wheeled backpack with the Cleveland Public Library logo on it! I refuse to stop carrying backpacks, so this is a wonderful little freebie for me.
This post is going to be about World Book Night (because they're awesome and I'm trying to spread the word), and about The Immortal Life of Henrietta Lacks, since it is also awesome and I'm also trying to spread the word.
What is World Book Night?
World Book Night is an annual celebration designed to spread a love of reading and books. To be held in the U.S. as well as the U.K. and Ireland on April 23, 2012. It will see tens of thousands of people go out into their communities to spread the joy and love of reading by giving out free World Book Night paperbacks
...
Successfully launched in the U.K. in 2011, World Book Night will also be celebrated in the U.S. in 2012, with news of more countries to come in future years. Please join our mailing list for regular World Book Night U.S. news. And thank you to our U.K. friends for such a wonderful idea!
Additionally, April 23 is UNESCO’s World Book Day, chosen due to the anniversary of Cervantes’ death, as well as Shakespeare’s birth and death.
World Book Night U.S. is a nonprofit organization and applying for tax-exempt status as a 501(c)(3) charitable organization, supported by American book publishers, the American Booksellers Association, Barnes & Noble, the American Library Association, the Association of American Publishers, and Ingram Book Distributors.
FAQ info
Q. What is the difference between World Book Night and World Book Day?
A. World Book Day is celebrated in the UK and Ireland by giving schoolchildren a book token. World Book Night was introduced in 2011 in the UK and Ireland to bring attention to books for adult readers, with a few young adult books to be included this year, as will be the case in the United States’ inaugural year, 2012.
Q. Why not children’s books?
A. Many, many other wonderful programs already exist to get books to elementary age children. The goal of World Book Night is to seek out reluctant adult readers wherever they are, in towns and cities, in public settings or in places from nursing homes to food pantries, low income schools to mass transit.
Q. What exactly am I handing out?
A. World Book Night books are specially-produced, not-for-resale paperbacks. Book givers will receive 20 copies of the same book, a book they love from the list of 30 picks. Givers made 3 choices, and we are doing our best to get everyone their first or second choice.
As I mentioned, I received mine today. The full cover illustration of the regular hardback is inset into a white cover with "World Book Night U.S. 2012" at the bottom. The back cover includes a basic explanation of World Book Night and a list of the thirty books selected this year. Inside front cover is a "Dear Reader" letter explaining a bit more about World Book Night. Otherwise the book seems unchanged; it includes all the appendices and photos from the hardcover, no skimping on that! For those interested, there's a brief Reading Group guide at the very end after the index. I almost didn't see it, but it could be handy for folks interested in using this for a book group.
Q. Do I have to buy the books?
A. There is no charge for these special, not-for-resale editions. Givers will be responsible for any expenses incurred in picking up their carton and distributing the books. These books cannot be resold in any fashion.
Authors are foregoing royalties to make this possible, and American book publishers, the American Booksellers Association, Barnes Noble, the American Library Association, the Association of American Publishers, Ingram Book Company, UPS, and a dozen printers and binders have paid for the production and shipping. A full list is on the home page. Through their generosity, we are able to make the books available free of charge, along with the work of many volunteers - including you!
This year's 30 book choices (I got my first choice, The Immortal Life of Henrietta Lacks, but I believe I also put in for Kindred and The Book Thief as my backups, iirc.)
Anyway, that's everything about World Book Night. On to the book...
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells-taken without her knowledge in 1951-became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance. This phenomenal New York Times bestseller tells a riveting story of the collision between ethics, race, and medicine; of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew.
Author biography
Rebecca Skloot is an award-winning science writer whose work has appeared in The New York Times Magazine; O, The Oprah Magazine; Discover; and many others. She is coeditor of The Best American Science Writing 2011 and has worked as a correspondent for NPR’s Radiolab and PBS’s Nova ScienceNOW. The Immortal Life of Henrietta Lacks took more than a decade to research and write, and instantly became a New York Times bestseller. It is being translated into more than twenty-five languages, adapted into a young reader edition, and being made into an HBO film produced by Oprah Winfrey and Alan Ball. Skloot is the founder and president of The Henrietta Lacks Foundation. She has a B.S. in biological sciences and an MFA in creative nonfiction. She has taught creative writing and science journalism at the University of Memphis, the University of Pittsburgh, and New York University. She lives in Chicago.
The Henrietta Lacks Foundation
Welcome to the web page for The Henrietta Lacks Foundation, a non-profit organization founded by Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, who is donating a portion of her book’s proceeds to the Foundation. Henrietta was a poor black tobacco farmer whose cancer cells, taken without her knowledge, became one of the most important tools in medicine, with damaging consequences for her family who today can’t afford access to the health care advances their mother’s cells helped make possible. The Foundation strives to provide financial assistance to needy individuals who have made important contributions to scientific research without personally benefitting from those contributions, particularly those used in research without their knowledge or consent. The Foundation gives those who have benefited from those contributions - including scientists, universities, corporations, and the general public - a way to show their appreciation to such research subjects and their families.
The Foundation has already awarded 27 grants to multiple qualifying members of Henrietta Lacks’s immediate family, and has considered many other applicants as well. The following are currently considered eligible categories for grant recipients: (i) education-related expenses [specifically, tuition and book expenses for accredited institutions] (ii) certain health care expenses not covered by insurance or other public health programs, and (iii) pre-approved emergency expenses.
The Foundation’s goal is to continue to help the Lacks family as well as others with similar needs who may qualify, such as descendants of research subjects used in the famous Tuskegee Syphilis Studies, those injected with sexually transmitted diseases without their knowledge by the US Government, and others.
Five Reasons Henrietta Lacks is the Most Important Woman in Medical History
JohnsHopkinsMagazine: Henrietta's Dance
By Rebecca Skloot -- written back in 2000 by the author of the book; this is a good short reflection of her writing style and the topics of the book.
NPR: 'Henrietta Lacks': A Donor's Immortal Legacy -- Scroll to the bottom of the brief article for an excerpt from the Prologue of The Immortal Life of Henrietta Lacks.
There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late 1940s and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her - a tumor that would leave her five children motherless and change the future of medicine. Beneath the photo, a caption says her name is "Henrietta Lacks, Helen Lane or Helen Larson."
No one knows who took that picture, but it's appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. She's usually identified as Helen Lane, but often she has no name at all. She's simply called HeLa, the code name given to the world's first immortal human cells - her cells, cut from her cervix just months before she died.
SmithsonianMag: Henrietta Lacks’ ‘Immortal’ Cells (interview with Rebecca Skloot)
Wikipedia on Henrietta Lacks
Lacks Family Website
Rebecca Skloot's homepage/The Immortal Life of Henrietta Lacks main site
FAQ
Q: Why is the story of Henrietta Lacks so important?
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.
Q: How is Henrietta’s family today, and how have they reacted to the book?
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.
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 answer questions or give talks themselves. They also travel extensively now 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.
Q: How has Henrietta’s family benefited from the book?
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. If you would like to invite them to speak, or if you would like to invite me 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.
Q: Have any companies or research institutions that have sold or benefited from HeLa cells given any money to the family? And how has Johns Hopkins responded to the story?
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.
While I'm recommending this book, I'd also like to make a mention of another book that really covers so much territory and contextualizes the Lacks' family experience within the larger framework of medical experimentation and ethical failure. I own a copy, and I've flipped through it, but I haven't brought myself to sit down a read it thoroughly yet, because I know just enough about what I'm going to read (research the history of gynecology someday, but only if you have a strong stomach) to have the shivers just thinking about it.
Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present
National Book Critics Circle Award Winner (Nonfiction)
PEN/Oakland Award Winner
BCALA Nonfiction Award Winner
Gustavus Meyers Award Winner
From the era of slavery to the present day, the first full history of black America’s shocking mistreatment as unwilling and unwitting experimental subjects at the hands of the medical establishment.
Medical Apartheid is the first and only comprehensive history of medical experimentation on African Americans. Starting with the earliest encounters between black Americans and Western medical researchers and the racist pseudoscience that resulted, it details the ways both slaves and freedmen were used in hospitals for experiments conducted without their knowledge-a tradition that continues today within some black populations. It reveals how blacks have historically been prey to grave-robbing as well as unauthorized autopsies and dissections. Moving into the twentieth century, it shows how the pseudoscience of eugenics and social Darwinism was used to justify experimental exploitation and shoddy medical treatment of blacks, and the view that they were biologically inferior, oversexed, and unfit for adult responsibilities. Shocking new details about the government’s notorious Tuskegee experiment are revealed, as are similar, less-well-known medical atrocities conducted by the government, the armed forces, prisons, and private institutions.
The product of years of prodigious research into medical journals and experimental reports long undisturbed, Medical Apartheid reveals the hidden underbelly of scientific research and makes possible, for the first time, an understanding of the roots of the African American health deficit. At last, it provides the fullest possible context for comprehending the behavioral fallout that has caused black Americans to view researchers-and indeed the whole medical establishment-with such deep distrust. No one concerned with issues of public health and racial justice can afford not to read Medical Apartheid, a masterful book that will stir up both controversy and long-needed debate.
Also, bonus wheeled backpack with the Cleveland Public Library logo on it! I refuse to stop carrying backpacks, so this is a wonderful little freebie for me.
This post is going to be about World Book Night (because they're awesome and I'm trying to spread the word), and about The Immortal Life of Henrietta Lacks, since it is also awesome and I'm also trying to spread the word.
What is World Book Night?
World Book Night is an annual celebration designed to spread a love of reading and books. To be held in the U.S. as well as the U.K. and Ireland on April 23, 2012. It will see tens of thousands of people go out into their communities to spread the joy and love of reading by giving out free World Book Night paperbacks
...
Successfully launched in the U.K. in 2011, World Book Night will also be celebrated in the U.S. in 2012, with news of more countries to come in future years. Please join our mailing list for regular World Book Night U.S. news. And thank you to our U.K. friends for such a wonderful idea!
Additionally, April 23 is UNESCO’s World Book Day, chosen due to the anniversary of Cervantes’ death, as well as Shakespeare’s birth and death.
World Book Night U.S. is a nonprofit organization and applying for tax-exempt status as a 501(c)(3) charitable organization, supported by American book publishers, the American Booksellers Association, Barnes & Noble, the American Library Association, the Association of American Publishers, and Ingram Book Distributors.
FAQ info
Q. What is the difference between World Book Night and World Book Day?
A. World Book Day is celebrated in the UK and Ireland by giving schoolchildren a book token. World Book Night was introduced in 2011 in the UK and Ireland to bring attention to books for adult readers, with a few young adult books to be included this year, as will be the case in the United States’ inaugural year, 2012.
Q. Why not children’s books?
A. Many, many other wonderful programs already exist to get books to elementary age children. The goal of World Book Night is to seek out reluctant adult readers wherever they are, in towns and cities, in public settings or in places from nursing homes to food pantries, low income schools to mass transit.
Q. What exactly am I handing out?
A. World Book Night books are specially-produced, not-for-resale paperbacks. Book givers will receive 20 copies of the same book, a book they love from the list of 30 picks. Givers made 3 choices, and we are doing our best to get everyone their first or second choice.
As I mentioned, I received mine today. The full cover illustration of the regular hardback is inset into a white cover with "World Book Night U.S. 2012" at the bottom. The back cover includes a basic explanation of World Book Night and a list of the thirty books selected this year. Inside front cover is a "Dear Reader" letter explaining a bit more about World Book Night. Otherwise the book seems unchanged; it includes all the appendices and photos from the hardcover, no skimping on that! For those interested, there's a brief Reading Group guide at the very end after the index. I almost didn't see it, but it could be handy for folks interested in using this for a book group.
Q. Do I have to buy the books?
A. There is no charge for these special, not-for-resale editions. Givers will be responsible for any expenses incurred in picking up their carton and distributing the books. These books cannot be resold in any fashion.
Authors are foregoing royalties to make this possible, and American book publishers, the American Booksellers Association, Barnes Noble, the American Library Association, the Association of American Publishers, Ingram Book Company, UPS, and a dozen printers and binders have paid for the production and shipping. A full list is on the home page. Through their generosity, we are able to make the books available free of charge, along with the work of many volunteers - including you!
This year's 30 book choices (I got my first choice, The Immortal Life of Henrietta Lacks, but I believe I also put in for Kindred and The Book Thief as my backups, iirc.)
Anyway, that's everything about World Book Night. On to the book...
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells-taken without her knowledge in 1951-became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance. This phenomenal New York Times bestseller tells a riveting story of the collision between ethics, race, and medicine; of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew.
Author biography
Rebecca Skloot is an award-winning science writer whose work has appeared in The New York Times Magazine; O, The Oprah Magazine; Discover; and many others. She is coeditor of The Best American Science Writing 2011 and has worked as a correspondent for NPR’s Radiolab and PBS’s Nova ScienceNOW. The Immortal Life of Henrietta Lacks took more than a decade to research and write, and instantly became a New York Times bestseller. It is being translated into more than twenty-five languages, adapted into a young reader edition, and being made into an HBO film produced by Oprah Winfrey and Alan Ball. Skloot is the founder and president of The Henrietta Lacks Foundation. She has a B.S. in biological sciences and an MFA in creative nonfiction. She has taught creative writing and science journalism at the University of Memphis, the University of Pittsburgh, and New York University. She lives in Chicago.
The Henrietta Lacks Foundation
Welcome to the web page for The Henrietta Lacks Foundation, a non-profit organization founded by Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, who is donating a portion of her book’s proceeds to the Foundation. Henrietta was a poor black tobacco farmer whose cancer cells, taken without her knowledge, became one of the most important tools in medicine, with damaging consequences for her family who today can’t afford access to the health care advances their mother’s cells helped make possible. The Foundation strives to provide financial assistance to needy individuals who have made important contributions to scientific research without personally benefitting from those contributions, particularly those used in research without their knowledge or consent. The Foundation gives those who have benefited from those contributions - including scientists, universities, corporations, and the general public - a way to show their appreciation to such research subjects and their families.
The Foundation has already awarded 27 grants to multiple qualifying members of Henrietta Lacks’s immediate family, and has considered many other applicants as well. The following are currently considered eligible categories for grant recipients: (i) education-related expenses [specifically, tuition and book expenses for accredited institutions] (ii) certain health care expenses not covered by insurance or other public health programs, and (iii) pre-approved emergency expenses.
The Foundation’s goal is to continue to help the Lacks family as well as others with similar needs who may qualify, such as descendants of research subjects used in the famous Tuskegee Syphilis Studies, those injected with sexually transmitted diseases without their knowledge by the US Government, and others.
Five Reasons Henrietta Lacks is the Most Important Woman in Medical History
JohnsHopkinsMagazine: Henrietta's Dance
By Rebecca Skloot -- written back in 2000 by the author of the book; this is a good short reflection of her writing style and the topics of the book.
NPR: 'Henrietta Lacks': A Donor's Immortal Legacy -- Scroll to the bottom of the brief article for an excerpt from the Prologue of The Immortal Life of Henrietta Lacks.
There's a photo on my wall of a woman I've never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It's the late 1940s and she hasn't yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her - a tumor that would leave her five children motherless and change the future of medicine. Beneath the photo, a caption says her name is "Henrietta Lacks, Helen Lane or Helen Larson."
No one knows who took that picture, but it's appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. She's usually identified as Helen Lane, but often she has no name at all. She's simply called HeLa, the code name given to the world's first immortal human cells - her cells, cut from her cervix just months before she died.
SmithsonianMag: Henrietta Lacks’ ‘Immortal’ Cells (interview with Rebecca Skloot)
Wikipedia on Henrietta Lacks
Lacks Family Website
Rebecca Skloot's homepage/The Immortal Life of Henrietta Lacks main site
FAQ
Q: Why is the story of Henrietta Lacks so important?
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.
Q: How is Henrietta’s family today, and how have they reacted to the book?
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.
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 answer questions or give talks themselves. They also travel extensively now 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.
Q: How has Henrietta’s family benefited from the book?
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. If you would like to invite them to speak, or if you would like to invite me 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.
Q: Have any companies or research institutions that have sold or benefited from HeLa cells given any money to the family? And how has Johns Hopkins responded to the story?
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.
While I'm recommending this book, I'd also like to make a mention of another book that really covers so much territory and contextualizes the Lacks' family experience within the larger framework of medical experimentation and ethical failure. I own a copy, and I've flipped through it, but I haven't brought myself to sit down a read it thoroughly yet, because I know just enough about what I'm going to read (research the history of gynecology someday, but only if you have a strong stomach) to have the shivers just thinking about it.
Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present
National Book Critics Circle Award Winner (Nonfiction)
PEN/Oakland Award Winner
BCALA Nonfiction Award Winner
Gustavus Meyers Award Winner
From the era of slavery to the present day, the first full history of black America’s shocking mistreatment as unwilling and unwitting experimental subjects at the hands of the medical establishment.
Medical Apartheid is the first and only comprehensive history of medical experimentation on African Americans. Starting with the earliest encounters between black Americans and Western medical researchers and the racist pseudoscience that resulted, it details the ways both slaves and freedmen were used in hospitals for experiments conducted without their knowledge-a tradition that continues today within some black populations. It reveals how blacks have historically been prey to grave-robbing as well as unauthorized autopsies and dissections. Moving into the twentieth century, it shows how the pseudoscience of eugenics and social Darwinism was used to justify experimental exploitation and shoddy medical treatment of blacks, and the view that they were biologically inferior, oversexed, and unfit for adult responsibilities. Shocking new details about the government’s notorious Tuskegee experiment are revealed, as are similar, less-well-known medical atrocities conducted by the government, the armed forces, prisons, and private institutions.
The product of years of prodigious research into medical journals and experimental reports long undisturbed, Medical Apartheid reveals the hidden underbelly of scientific research and makes possible, for the first time, an understanding of the roots of the African American health deficit. At last, it provides the fullest possible context for comprehending the behavioral fallout that has caused black Americans to view researchers-and indeed the whole medical establishment-with such deep distrust. No one concerned with issues of public health and racial justice can afford not to read Medical Apartheid, a masterful book that will stir up both controversy and long-needed debate.