I thought I knew enough about HeLa cells and their origins, but Rebecca’s book shattered that impression. I’ve worked with the cells all my career and have always appreciated them, and the fact that Henrietta gave science something fabulous, but the back story I didn’t appreciate. How the whole affair deeply affected that family, and what they went through. I want to thank Rebecca for working so hard to get the whole story. And for being nice enough that the family trusted her! She not only vividly portrays what the family went through, but shows what HeLa has meant to science, how unscrupulous people always want to take advantage of others, and the good and bad about science. In the end, I keep coming back to the same question: if we had informed consent laws back then, would Henrietta have said no? If so, it would have been a tremendous loss for science and medicine. Or should I say setback – because eventually there would have been others. That’s how science is: someone always makes the discovery, sooner or later.
There will be a public launch of the book on 1 February at 7pm at McNally Jackson Bookstore in New York City. Rebecca will read a bit from the book, talk about it, sign it, and answer questions. Below are the details of the public event. If you are in the New York area, and have an interest in science, I encourage you to attend. I will certainly be there!
Public Launch Event: Rebecca Skloot Discusses Her New Book “The Immortal Life of Henrietta Lacks”
Award winning science writer Rebecca Skloot discusses and signs her new book, The Immortal Life of Henrietta Lacks. Books available for sale at this launch event one day before the book’s official publication date. Free & open to the public.
Book description: Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells — taken without her knowledge — became one of the most important tools in medicine. The first immortal human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons — more than 100 Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, & the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Now Rebecca Skloot takes us on an extraordinary journey, from the colored ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henriettas small, dying hometown of Clover, Virginia — a land of wooden slave quarters, faith healings, and voodoo — to East Baltimore today, where her children and grandchildren live, and struggle with the legacy of her cells. Henriettas family did not learn of her immortality until more than twenty years after her death, when scientists began using her husband and children in research without informed consent. The story of the Lacks family — past and present — is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. More information at rebeccaskloot.com.
“Skloot’s book is wonderful, deeply felt, gracefully written, sharply reported.” — Susan Orlean, author of The Orchid Thief
“This is an extraordinary book, haunting and beautifully told.” — ERIC SCHLOSSER, author of Fast Food Nation
When: Monday, February 1 2010, 07:00 PM
Where: McNally Jackson Books, 52 Prince Street, New York, NY
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How much of the concern of the descendants is really interest in some money? Families have been known to play up their upset and even discover that they ever cared if they smell money now or in the future. Physicians in hospitals know all about this. I wonder how well the author does? I think the question needs to be asked whether or not the author is being used as part of a program to obtain payment,. In the end, it will come from the taxpayer.
There is a huge difference between experimenting on a person without their consent and using cells harvested from their body without it. There is no significant consciousness associated with a culture dish of cells. The idea of personal ownership of one's cells apart from our bodies is, I think, simply silly.
Ellen, it seems like you've had some negative experiences with families trying to take writers and scientists for a ride. Sorry about that. Skloot is very well aware of that kind of behavior. I was fortunate enough to have read an advance copy of the book; there is no program to obtain money, and what happened to the Lacks family is way more complicated than the scenario you suggest. It's a great read and deals fairly with issues that you can clearly relate to. Check it out.
I strongly suggest you read the book because it will answer all your questions. It presents the story in a balanced and unbiased manner. The family is upset that others profited from the sale of HeLa cells. They were far more disturbed with spiritual issues, e.g. the idea that Henrietta still lived on throughout the world. As for ownerships of cells – there is an entire chapter on this thorny legal issue.
Small world note. Rebecca Skloot's father is the tremendously talented writer Floyd Skloot. His book, In the Shadow of Memory, is a moving memoir of his heartrending battle with the neuroimmune disease Chronic Fatigue Syndrome (CFS) which his medical tests showed was caused by a viral infection. (Many of the viruses that have been associated with CFS are neurotropic are neurotropic in nature and the brain damage he describes has been well documented by clinicians and neuroscientists such as Ben Natelson and Frank Duffy) His case is tragic, but not an unusual one. He also wrote: The Night-Side: Chronic Fatigue Syndrome & The Illness Experience
Rebecca Skloot, like her father Floyd Skloot is an incisive writer. In a viral small world kind of way Rebecca's father was diagnosed with CFS in 1988. Although he has written many books, his book, “In the Shadow of Memory” regarding his childhood and the neurological viral damage he sustained as the result of CFS is an informative and rewarding read.
I received the following email from Matthew, who passed it on from a colleague:
If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons — more than 100 Empire State Buildings. If a culture flask could generate 100g of cells (which I think is high; I seem to recall getting on the order of 20ml of spun cells from a 1L flask), that would correspond to 500 billion culture flasks. At $5 per flask that's $2.5 trillion just for the flasks (ignoring costs for other disposables, media (expensive!), BL2 facilities, etc). If you start from 10 grams it's only 42 doublings (with no consumption of results) to get to 5.0E13 grams. HeLa doubles in a day, so if you could have that population in a huge, sterile swimming pool filled with replenished media and enough space (suspension or surface, not sure what's needed) you could get your 100 Empire State buildings in a month and a half. I think it's possible the author was told that the HeLa line had gone through 42 (or some such) passages, and simply did 2^N to arrive at their number.
The family of Henrietta Lacks should be compensated now, even if consent laws
had not been enacted at that time. If every scientist who has ever used the cells
would contribute one penny to a fund for the family, it would be a step toward
justice.
The family of Henrietta Lacks should be compensated now, even if consent laws
had not been enacted at that time. If every scientist who has ever used the cells
would contribute one penny to a fund for the family, it would be a step toward
justice.
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