What Rebecca's Reading
- 'Serpent-Handling' West Virginia Pastor Dies From Snake Bite A “serpent-handling” West Virginia pastor died after his rattlesnake bit him during a church ritual, just as the man had apparently watched a snake kill his father years before.
- A Dispute Over Who Owns a Twitter Account Goes to Court How much is a tweet worth? And how much does a Twitter follower cost?
- A dollar badly spent: New facts on processed food in school lunches In a collaboration between The New York Times and the Investigative Fund, reporter Lucy Komisar delved into the billion-dollar business of the national school lunch program and found some unsettling news.
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Rebecca Skloot's News
December 31, 2015
Controversial New Regulations Proposed to Require Consent for All Tissue Research. Rebecca Skloot’s new OpEd Urges Action
Your cells and genetic information can be used in research without your knowledge — this happens all the time. It leads to important medical advances we all want to benefit from, but should scientists have to ask your permission first? The federal government has proposed controversial changes to the rules governing tissue research, which would — for the first time — require consent for research on all blood and tissues you leave behind after a visit to the doctor. This could all change (or fizzle) depending on what happens during the current public comment period. Most people don’t know this is happening, or that policymakers are required to give them a voice in how this turns out. So far, the public isn’t involved in this conversation, and Rebecca hears from many of you that you want to be. So now’s your chance … BUT ONLY IF YOU COMMENT BY JAN 6th. To learn about these proposed changes, and how they relate to the story of Henrietta Lacks, read Rebecca’s New York Times OpEd, “Your Cells. Their Research. Your Permission?” and take action by Jan 6th.
For more information about the current regulations that would be changing under this new proposal, their history and the long debate surrounding the use of tissues in research without consent, see “Taking The Least of You,” an article Rebecca wrote for the New York Times in 2006.
September 19, 2013
NIH and Lacks Family Reach Deal Over Use of HeLa Genome – The Sequel to The Immortal Life of Henrietta Lacks (free)
On March 23, 2013, Rebecca Skloot wrote an OpEd for The New York Times titled, “The Immortal Life of Henrietta Lacks: The Sequel.” It begins like this:
LAST week, scientists sequenced the genome of cells taken without consent from a woman named Henrietta Lacks. She was a black tobacco farmer and mother of five, and though she died in 1951, her cells, code-named HeLa, live on. They were used to help develop our most important vaccines and cancer medications, in vitro fertilization, gene mapping, cloning. Now they may finally help create laws to protect her family’s privacy — and yours.
The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Later their medical records were released to the press and published without consent. Because I wrote a book about Henrietta Lacks and her family, my in-box exploded when news of the genome broke. People wanted to know: did scientists get the family’s permission to publish her genetic information? The answer is no.
To continue reading that story, click here.
After that OpEd was published, Rebecca gathered a group of scientists, policy makers and bioethics experts to work with the Lacks family, to inform them about the HeLa genome and its possible implications for the Lacks family and for science, and to find a resolution to the issues surrounding its release to scientists and the public. August 7, 2013, an agreement between the Lacks family and the NIH was announced, and the news appeared on the front page of the New York Times, Washington Post, in nearly every other US news outlet, and numerous others abroad. Below you will find a selection of coverage which, when read together, explains the agreement, the process by which it was reached, and more:
“Deal Done Over HeLa Cell Line,” Nature, 8/7/13
Q&A with Rebecca Skloot: NIH Brokers HeLa Genome Deal , The Scientist, 8/7/13
Nature Q&A With NIH Director: Francis Collins Explains HeLa Agreement
Feds, Family Reach Deal on Use of DNA Information, Associated Press, 8/7/13
Since this agreement was announced, the HeLa Genome Working Group, which includes NIH scientists and two members of Henrietta Lacks’s family, have received and approved numerous applications from scientists hoping to use the HeLa genome in research. You can visit the NIH website where the HeLa genome is now stored to learn more about the HeLa Genome Working Group, to see the research the group has approved, to apply for access to use the HeLa genome in research, and more.
You can also read about Rebecca’s response to the media’s (lack of) coverage of the initial publication of the HeLa genome without the family’s consent. The release of the HeLa genome was covered by numerous media outlets, but not one story raised the question of whether the family had been contacted for consent to publish the HeLa genome. “HeLa-cious coverage: Media overlook ethical angles of Henrietta Lacks story”
June 7, 2013
The story goes on: Recently, scientists announced that they’d sequenced the genome of Henrietta Lacks’s cells and published it online, where it was freely available to anyone who cared to download it. When news of the genome hit, Rebecca Skloot’s inbox exploded. People wanted to know: did scientists get the family’s permission to sequence publish Henrietta’s genetic information (which also contains genetic information about her family)? The answer is no. As Francis S. Collins, director of the National Institutes of Health, says: “This latest HeLa situation really shows us that our policy is lagging years and maybe decades behind the science. It’s time to catch up.”
Read the full story of this latest chapter in the story of Henrietta Lacks and her family in Rebecca Skloot’s OpEd in the New York Times, The Immortal Life of Henrietta Lacks The Sequel, the first update published on the Lacks family since The Immortal Life of Henrietta Lacks was released.
And for Rebecca Skloot’s reaction to the (lack of) media coverage of this latest development in the HeLa story, see HeLa Curious Coverage: Media overlook ethical angles of Henrietta Lacks story
May 23, 2012
World Book Night was celebrated in cities all over the United States on April 23, 2012 when 25,000 givers across the country distributed half a million free books, including The Immortal Life of Henrietta Lacks by Rebecca Skloot. It was an amazing night in Baltimore, Maryland where author Rebecca Skloot and the Lacks family distributed over 300 copies of The Immortal Life to adults who would otherwise never have gotten copies of the book.
It was a whirlwind day of events beginning with Rebecca speaking at Community College of Baltimore County (CCBC) and doing Q&As together with the Lacks family. Then, Rebecca joined one of several groups of Lacks family members at various public locations in East Baltimore to give away copies of the book for World Book Night.
May 8, 2012
The Immortal Life of Henrietta Lacks Author Rebecca Skloot to explore human-animal bond in new book for Crown
Contact: David Drake
THE IMMORTAL LIFE OF HENRIETTA LACKS AUTHOR REBECCA SKLOOT
TO EXPLORE HUMAN-ANIMAL BOND IN NEW BOOK FOR CROWN
(New York, NY — October 13, 2011) Rebecca Skloot, the author of the multi-year, critically acclaimed, nonfiction bestseller The Immortal Life of Henrietta Lacks, has reached agreement with Crown Publishers to write a new book that will focus on the human-animal bond and explore some of the biggest, and as yet unanswered, questions at the heart of animals’ roles in our lives.
The Immortal Life of Henrietta Lacks was published by Crown in hardcover in February 2010 and has sold more than 1.25 million copies to-date in the U.S., print and e-book editions combined. It has been on the New York Times hardcover and trade paperback bestseller lists for a combined 74 weeks, and counting. The book was awarded the National Academy of Science, National Academy of Engineering, and Institute of Medicine’s 2011 Best Book Award, among numerous other accolades. It was chosen as Amazon.com’s #1 Best Book of 2010, and named among the best books of the year by more than 60 media outlets, including the New York Times, Publishers Weekly, and O: The Oprah Magazine.
In her new book, which is as yet untitled, Ms. Skloot will employ the intimate storytelling and masterful reporting that made The Immortal Life of Henrietta Lacks a favorite of readers and critics alike. She will explore, among many other subjects, the neurology of human-animal relationships, human nature and responsibility, and the unexamined ethics of our relationship with animals. A publication date has not yet been set.
Ms. Skloot worked for more than a decade in veterinary medicine, first as a nurse for animals in general practices and emergency rooms, and later as a technician in veterinary morgues and neurology labs. In writing her book, she will weave personal stories — her own and others’ — with science, medicine, ethics, and history.
Molly Stern, Vice President, Publisher, Crown Publishers, acquired North American, audio, e-book, and first serial rights from Simon Lipskar at Writers House. Writers House retains foreign rights.
Said Molly Stern, “It has been a long time since a first-time science writer dominated bestseller lists in the way that Rebecca Skloot has, and her success speaks to her rare ability to convey scientific and ethically-nuanced subjects with real emotional power and clarity. We are very proud to be publishing her next book, which will resonate deeply with a wide range of readers.”
Crown Publishers is an imprint of the Crown Publishing Group division of Random House, Inc., whose parent company is Bertelsmann AG.
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May 8, 2012
Steve Silberman over at NeuroTribes recently asked several writers to share stories about teachers who’d had important impacts on their lives. Here is Rebecca’s contribution about her experience going through school, and the way her own path changed:
As people who’ve read The Immortal Life of Henrietta Lacks know, I first learned about Henrietta and her amazing HeLa cells in a basic biology class when I was 16 years old. My teacher, Mr. Defler, wrote Henrietta’s name on the chalkboard and told us she was a black woman. That was it, and class was over. I followed him to his office saying, “Who was she? Did she have any kids? What do they think about those cells?” He told me no one knew anything else about her. ”But if you’re curious,” he told me, “go do some research, write up a little paper about what you find and I’ll give you some extra credit.” At that point I was planning to be a veterinarian — something I’d been determined to do since I was a small child. I had no intention of becoming a writer. I looked for information about Henrietta but didn’t find anything, so I didn’t write that extra credit paper. But I never forgot about her — in fact, I was a bit obsessed by her.
More than a decade later, while working my way through an undergraduate degree in biology so I could apply for vet school, I took my first creative writing class as an elective. (Amazingly, the school I went to counted creative writing toward its required foreign language requirement, so I signed up for creative writing thinking it would be less work than the alternative… but that’s another story). At the start of that class, the teacher gave us this writing prompt: ”Write for 15 minutes about something someone forgot.” I scribbled, “Henrietta Lacks” at the top of my page and began writing an essay about how the whole world seemed to have forgotten about Henrietta, but I was weirdly obsessed with her. I fell in love with writing in that class but still had no intention of becoming a professional writer. I had what I now refer to as Veterinary Tunnel Vision.
Then one day, when I was getting ready to submit my applications for vet school, my writing teacher, the amazing John Calderazzo at Colorado State University, pulled me aside and said, Do you realize you’re a writer? And do you know there’s such a thing as a science writer? I didn’t. He told me he thought the world needed more people who understood science and could convey it to the public. You know, he said, you don’t have to go to vet school just because that’s what you always planned to do – you could get an MFA in writing instead. I told him I’d never even heard of an MFA and had never for a moment thought of giving up on my dream of becoming a vet. Then he said these essential words: Letting go of a goal doesn’t mean you’ve failed, as long as you have a new goal in its place. That’s not giving up, it’s changing directions, which can be one of the best things you ever do in life. The next day I started researching MFA programs in creative nonfiction writing. The rest, as they say, is history.
In 1988 when my biology teacher told me to see if I could find any information about Henrietta, neither one of us could have imagined that more than twenty years later, I’d publish a book about her having spent most of my adult life looking to answer a question he inspired in that classroom. Before my book came out, I tracked down that biology teacher, now long retired, and sent him a note: “Dear Mr. Defler, here’s my extra credit project. It’s 22 years late, but I have a good excuse: No one knew anything about her.” He was shocked. I was just one of thousands of students he’d taught in countless huge auditoriums, most of us (myself included) looking disaffected and half asleep. He didn’t remember that moment in class when he first told me about Henrietta, but I did. Which is an amazing thing about classrooms: You never know what random sentence from a teacher will change a student’s life.
(You can read the original post here, along with stories from many other writers about their educational experiences and teachers who inspired them.)
September 17, 2011
The National Academies of Science has just awarded its 2011 Best Book Award to The Immortal Life of Henrietta Lacks, calling it, “A compelling and graceful use of narrative that illuminates the human and ethical issues of scientific research and medical advances.”
Click here for more information from the National Academies of Science.
September 8, 2011
“We’re very excited to be reading a book that’s been tearing up the bestseller lists for the past two years, Rebecca Skloot’s The Immortal Life of Henrietta Lacks,” writes Jeff Howe, facilitator of The Atlantic’s 1book140 reading club.
Get a quick primer on The Atlantic 1book140 reading club.
September 6 – 12: Discuss Part I, tagging each tweet with #1b140_1
September 12 – 19: Discuss Part II, using #1b140_2
September 19 – 30 Discuss Part III, Epilogue, Afterword, etc., using #1b140_3
August 29, 2011
NPR’s Talk of the Nation Interviews Rebecca Skloot about ‘Common Reads’ College Programs and The Immortal Life
NPR reports, “In recent years, a growing number of colleges have begun assigning “common reads,” books that all first year students read over the summer, and then discuss during their first week of school. Author Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, is one of the most talked about books of 2010. It has since become a popular 2011 freshman common read.”
“There really isn’t any department within a university that can’t find something specific in the book that relates to it,” Rebecca Skloot pointed out in the NPR interview, “whether it’s law, women’s studies — it really does cross all of the different boundaries. And one of the things that I hear over and over from students and from teachers is not that it just touches all the disciplines, but it touches every student personally.
Because there isn’t a single person out there that hasn’t benefitted personally from these cells, whether it’s because they got the polio vaccine, or someone that they love survived cancer by being treated with a drug made using HeLa cells, or because they were conceived through [in vitro fertilization], which HeLa cells helped develop in the beginning…And there’s always a point in reading the book when a student realizes that. They sort of turn a page and go, ‘Oh, wait — that’s me! My mom took that drug.’ And I think that’s part of what helps to sort of bring it to life within the classroom.”
Listen to the podcast of NPR’s interview with Rebecca Skloot.
August 22, 2011
“A historical highway marker memorializing the legacy of Henrietta Lacks was dedicated at St. Matthew Baptist Church near Lacks’ final resting place,” reports the Gazette Virginian. “The Virginia Department of Historic Resources dedicated the marker to Lacks on July 29, 2011 close to her rural childhood home in Clover.”
Henrietta Lacks historical marker dedication ceremony in Clover, Virginia. In addition to the general community, guests of honor included some of Henrietta Lacks’ children and grandchildren.
Henrietta’s sons, David “Sonny” Lacks and Zakariyya Bari Abdul Rahman at the marker site honoring their mother.
Henrietta Lacks’ family members, including her children and great-grandchildren at the historical marker site.
Henrietta Lacks’ family members, including her children and great-grandchildren at the historical marker site.
The historical highway marker, honoring Henrietta Lacks and her contributions to science.
Photo credit, all photos: Virginia Department of Historic Resources
Named by more than 60 critics as one of the best books of 2010Buy the Book
The Henrietta Lacks Foundation strives to provide financial assistance to needy individuals who have made important contributions to scientific research without their knowledge or consent.