Science and Money

HeLa

Henrietta Lacks

While I appreciate you talking about all the reviews. I would much rather see more posts about your ideas and your opinions. Longer posts with good content would be wonderful.

This post is kind of bland... =\

I hope to be back soon to visit!
=)

I saw your book about a week ago. I can't wait to buy it. It looks like a interesting read. I am in the medical field particularly, nursing. When I first read the cover, I thought amazing. How sad. After thinking about it today and reading online about it, which I do have some medical background. I hate to say this must go on all the time without our knowledge. This is terriblly fantastic, but I am sure there is lots of stuff that goes on, with stem cells, research etc that goes on. It is terrible that when things get into man's hands without any kind of regulation, not just scientists but anyone thinks they can do what ever they want. It's too bad this happened to her, and her family. I can't wait to read your book. But I just wanted to let you know that what you started probably opened a can of worms. I hope it makes every one about what men with power and government can get away. I hope the book sales help the family. Good luck with your book and great success.
Susan Curtis
Myrtle Beach, SC.

Just a note to say how much I enjoyed your book -- it was incredibly well written and an important story. I've written a review on my site from a lay-person's perspective. I hope you'll write more in the future, your style is excellent.
Anne

This is an absolutely wonderful book that I only received yesterday in the post from Amazon.ca. I couldn't put it down & have just finished it. It is a very moving personal story of what seems to be an abstruse scientific issue -- the writing is masterful, the scholarship superb.An incredible story. Bravo and a tip of the tam-o'-shanter to you! As chair of a large Research Ethics Board I shall make your book recommended reading for its members. (PS You may be happy to know your book is at the top of the list for medical ethics books in Canada at amazon.ca - one ahead of my book! :)

Philip Hebert MD PhD

I am so loving your book--about 70% finished with it. The parts about your time with Deborah make me laugh out loud at times. What a great and difficult time you must have had writing this book!
Thanks, JO

I applaud the strength and determination it took to bring forward the story of Henrietta Lacks and the difficulties her family has faced throughout the years. As a health care professional I find ethics one of the hardest parts of my job. I can only hope that bringing this story to life will humanize research efforts and offer real consent to many of the ongoing and future research projects. We are forever indebted to the cells of Henrietta Lacks and the medical advances she has offered the international medical community. I look to share this story in hopes of championing for the medically underserved and those at risk of being taken advantage of for the sake of research. Thank you for such a quality text - I hope the story inspires ethical research practice and the respect for Ms. Lacks she deserves.

C. Meyer, RN, MSN, CEN

I enjoyed reading your book and it has given me much pause for thought. Strangely, I only found your blog when I was looking up "Patient Narratives" on PubMed and I came upon a recent article about your father, Floyd. That led me to his web page and on that a link to yours. "There are no accidents, there are only appointments."
Your book would be perfect for the kinds of programs that many colleges have where the entire community reads one book and discusses it over a month or so. Are any doing that now? I will see if there is interest here at Williams. I teach a course in Medical Humanities occasionally here (I am a local physician).
The Op-Ed author rightly says, "As the new book 'The Immortal Life of Henrietta Lacks' reminds us, behind every biological sample is a human being." Osler is famously, but erroneously quoted as saying, "It is more important to treat the patient who has the disease, than the disease the patient has." (It was probably Maimonides, but may go back even further). Similarly, exploring Henrietta Lacks's life and the fates of her relatives turns out to be more important than just focusing on the science (to me at least). Beyond health care, there are unnatural causes for illness which are rooted in societal inequities. These determine how we are sick and how we are well. These are difficult to escape and your moving narrative of HeLa's children exemplifies that. "Dale" would be alive and well today had she not been poor and black and second class in the Baltimore of her youth. This so-called "health care" we are all debating will not reverse the forces that make us ill or allow us to be "well."

I enjoyed reading your book and it has given me much pause for thought. Strangely, I only found your blog when I was looking up "Patient Narratives" on PubMed and I came upon a recent article about your father, Floyd. That led me to his web page and on that a link to yours. "There are no accidents, there are only appointments."
Your book would be perfect for the kinds of programs that many colleges have where the entire community reads one book and discusses it over a month or so. Are any doing that now? I will see if there is interest here at Williams. I teach a course in Medical Humanities occasionally here (I am a local physician).
The Op-Ed author rightly says, "As the new book 'The Immortal Life of Henrietta Lacks' reminds us, behind every biological sample is a human being." Osler is famously, but erroneously quoted as saying, "It is more important to treat the patient who has the disease, than the disease the patient has." (It was probably Maimonides, but may go back even further). Similarly, exploring Henrietta Lacks life and the fates of her relatives turns out to be more important than just focusing on the science (to me at least). Beyond health care, there are unnatural causes for illness which are rooted in societal inequities. These determine how we are sick and how we are well. These are difficult to escape and your moving narrative of HeLa's children exemplifies that. "Dale" would be alive and well today had she not been poor and black and second class in the Baltimore of her youth. This so-called "health care" we are all debating will not reverse the forces that make us ill or allow us to be "well."

I saw you speak at Politics and Prose Bookstore in Washington, DC recently. You have really done something here. You opened a door to a dialogue that's long overdue. You have told a very important story. You have touched a family and in the process many, many people. I wish you well and will not be surprised when you to win the Pulitzer Prize. I just know it.

I heard your interview with Terry Gross on WHYY's "Fresh Air" a short time ago and I was fascinated by the subject. Ordered the book up from the local library and waited for my turn to read it. Sat down this weekend and devoured it like it was a thriller. It is. Thank you for your balanced treatment of these complicated relationship, social-political, educational, ethical, and scientific issues. What a wonderful piece of work.

I too came across previews for this book while researching Pubmed and NIH articles in the hopes of researching a rare and aggressive cancer that took my own mother and the potential links to my own illness. I am a passionate advocate of tolerance and hold a BA in Math and Science.
I knew I must have this book. After two weeks of searching
(all the local book stores were sold out), a dear friend at a publishing company got a hold of one for me.
When I received it, I literally devoured the contents in less than 24 hours. Brilliantly written with compassion, honesty and an understanding of not just science but the human soul. As someone who understands, intimately, the complex world of medicine and research studies and how a lack of educational exposure and understanding leaves an individual powerless, I applaud efforts for setting up an educational fund to the family members who remain. A final thank you to Henrietta who continues to save lives.

Nice job on Stephen Colbert last night. Loved the Centipede cells. Also I enjoyed the audiobook version of your book very much. A well done production.

Things have not changed at Johns Hopkins: http://adventuresincardiology.com

The Balt Sun link provided does not get you to the Op-Ed piece mentioned. Here is a better link.
http://www.baltimoresun.com/news/opinion/oped/bal-op.lacks12feb12,0,746…

The Immortal Life of Henrietta Lacks and Skloot on ABC World News Tonight! Plus Lots of Review Love

rskloot — Sun, 31 Jan 2010 07:50:18 +0000

The Immortal Life of Henrietta Lacks and Skloot on ABC World News Tonight! Plus Lots of Review Love

A quick post as I run out the door for the teeveey studio: Set your TiVos and your DVRs, mark your calendars: Tonight I'll be on ABC World News talking about my new book, The Immortal Life of Henrietta Lacks. The segment will also feature members of Henrietta's family, and Vincent Racaniello with lots, and lots of HeLa cells.

ALSO: The first reviews of The Immortal Life are starting to hit newspapers. There's a terrific review on the front page of the Washington Post Outlook section today, and another great one in the St. Petersburg Times. Update: This great review just in from the Boston Globe too!

As the kids say: wOOt! Stay tuned, later today, I'll be posting details of the many HeLa related events happening this week in New York: At Columbia, McNally Jackson Bookstore, and more.

rskloot Sun, 01/31/2010 - 02:50

Tags

Appearances

HeLa

Media Appearances

The Immortal Book Tour

ABC World News

http://www.cnn.com/2010/HEALTH/02/04/baby.dna.government/index.html?hpt…

Science Writing

Came here immediately after reading the Boston Globe review, to be sure you knew about it. What wonderful things to read!

As a writer and editor whose work focuses upon Black health and wellness, I cannot wait to read this book. Thank you very much for writing it. I've told all my friends. Hope to see you when you're in Philly.

I think the book sounds interesting. However, I don't understand why it has to bring up race - is she the ONLY person whose tissue was put in this situation? How could anyone know that it would have been different if she was white? Also, why should her family get money? Has everyone whose tissue has offered medical/scientific advice or knowledge been compensated? No!! That would hamper a lot of future scientific research, wouldn't it?

Also, what if they asked her and she had said no????

Now everybody is all fired up about the white man taking advantage and the drug companies getting rich. I think the interesting part of the story is lost on angry people who see racism in everything. Too bad..

As a scientist, I've read many a paper that have used HeLa cells. I saw a post on Smithsonian.com about the book and found that I'd never really thought about where the cells came from orignally-I shared the article with my fellow scientist friends on facebook and a friend came back with....cool, now I wonder where Jurkat cells came from (another widely used cell line in the study of Immunology). When working with a cell line it is easy to forget the cells came from a person.

@A Scientist: Thanks for your comment -- I'm thrilled to hear that the story has sparked that kind of conversation.

@Jessica Wright: You should read the book -- the story is far more complicated than what you imagine, based on your comment. The Lacks family agrees with you that it's not a story about racism. Have a look.

If/when my review copy arrives I'll do my best to get it out to the New Zealand audience! Good luck with it all. I can't judge the book without having read it (!), but you've chosen a great storyâI'm itching to read itâand the reviews seem to be all going your way!

I had my pre-ordered copy of your book delivered to my Kindle. I happened to be up reading when it arrived. Thinking I'd just read a few pages before getting off to bed, I started reading about 1:10am. I have been up all night and just finished the final page.

I can't remember the last time a book has gripped my so completely that I literally could not stop reading it! While I expected to be tired this morning, I feel surprising exhilerated. Your words have brought Henrietta lacks to life for me, and I am so grateful.

I've been in the medical field most of my life. I've worked with HeLa cells, heard about them in biology class where the importance of doing research with a single cell line was explained, and worked with immunology, virology and oncology researchers who have so heavily relied on HeLa cells to make some of the most astounding and life changing discoveries known to mankind. HeLa cells now have a name, a face, and a person attached to them, thanks to you.

I am also a white mom with adopted children of black and mixed ethnicities. Your book is now among those I will read to my children as I teach them about their rich heritage. Thanks to the 2008 election, one barrier has been broken and a hero among young black chilcren was born. Thanks to your book, my children will know this young black heroine and the impact of her life and her contribution to their lives.

I love that Deborah knows (feels) her mother is present. I pray Miss Lacks is in a place where she can understand the monumental impact she has had on millions and millions of lives.

A previous commentor spoke against making this story about ethnicity. I hope her comment was driven simply by not understanding rather than by something else. This HAS to be a story about race, because of who Henrietta Lacks was and is. In life, she was next to nothing, relegated to segregated drinking fountains and seats at the back of the bus, because of the color of her skin and the caste into which she was born. Her immortal cells, though colorless even under the microscope, have been valuable to the world of medical science beyond our ability to estimate. Do we really have to wonder if Henrietta Lacks, while she was alive, would have been allowed to achieve similar personal successes? This irony cannot be understated.

And to further answer this commentor's question about compensation, those who donate their bodies or organs or tissue to science for the education of other medical professionals are usually not compensated, but those who supply their tissues for use in medical science or for specific medical purposes are often compensated (its as simple as selling a pint of your plasma at your local blood bank).

To the family of Henrietta lacks, thank you for sharing her with Ms. Skloot so she could bring your Henrietta to us. You deserve to share in the compensation that Henrietta should have been given. I pray your hearts swell with pride knowing that your Henrietta has saved millions of children from crippling polio, helped change millions of lives as cancer-fighting drugs were invented and perfected using her cell lines, and that millions more are enjoying healthy lives with the assistance of medications invented using her cells. We are all forever indebted to her.

Ms. Skloot, thank you for bring Henrietta Lacks to life.

For the haters: go to Wikipedia and read about the Tuskegee Syphilis Experiment where black men were used as human guinea pigs. That memory is only one example of the on-going abuse and cultural rape that is all too familiar to black folks. So, it is only natural that this case is seen in the context of race. Are there other "immortal cells" that have been used and exploited to this degree? This is such a miraculous event - there should be no shame in announcing to the world that Henrietta Lacks was black. Maybe black folks are not demons after all. Maybe black folks are saviors.

I recall reading about Mrs Lacks about 30+ years ago. Up to that time medical science was positive that black women did not need PAP smears as black women did not develop cervical cancer. She changed medical theory and treatment for all women.

"In life, she was next to nothing, relegated to segregated drinking fountains and seats at the back of the bus, because of the color of her skin and the caste into which she was born."

I differ with you. Just because she or others were black in the segregated South does not mean they were "next to nothing". Clearly segregation was not fair and blacks suffered detriments. Many though led solid, even prosperous lives especially in the post WWII era when the benefits of war-related jobs reached blacks and brought some wealth and position to many. I've not read the book, but I see no evidence in the reviews and reports that she and her husband were impoverished or downtrodden. Indeed the courage and resources to challenge segregation came in large part from Southern Blacks, MLK among them, who grew up in segregation. It does no one credit, least of Blacks, to see people like Henrietta Lacks one dimensionally as resourceless victims.

That said, the photo shows a remarkably solid, handsome couple who clearly had a sense of style.

Do you see this story about story the DNA of babies as in any way related?

Sherman: this isnt a debate forum, but clearly you misunderstood the intent of my comment. Most assuredly, Henrietta and "Day" Lacks were not "nothing" to their friends, family and cultural community. But they WERE treated as "nothing" (meaning insignificant, less than worthy) by those who imposed and enforced segregation.
No amount of money could purchase a black man or woman a seat on the main floor of a segregated movie theater, a drink from a "Whites Only" water fountain, or medical care at a hospital that refused to treat black americans.
Read the book. Maybe that will help you understand my comment.

I haven't read your book yet, just the reviews, but here's a suggestion for your next one: Mrs. Henri Matisse. While watching a documentary about Henri Mattise, mention was made about his first wife, who was a member of the French Underground, was captured and imprisoned by the Germans, and who escaped from that prison. Add to that that she was the driving force behind the early part of the famous painter's career, and I think you have a biography that will be fascinating. I want to read it, but no one's written it. Perhaps you will!

Please update your tour schedule -- would love to see you when you get to SF (CA) ... This is really exciting and I'm so looking forward to learning more about this amazing story.

Rebecca, I'm about halfway through the book. It's absolute torture for me to put it down. I'm so glad you wrote this, and can't wait for your next one. But I hope it doesn't take ten years. :-)

I am nearly finished with the book and really enjoyed it. Even as a veterinarian I sometimes encounter people who fear that i am "experimenting" or somehow otherwise exploiting their pets. This book has helped me to understand these fears better and will make me more sensitive to such fears.
I was of course touched by the Lacks family stories, but was also surprised to be touched by the picture of Mary Kubicek (my mother was also named Mary, and worked in a medical school lab in the early 50's, and looked like she could have been Mary Kubicek's sister). I also have a relative who is a retired geneticist who has worked with HeLa cells. I think a copy of the book and a donation to the foundation would be a wonderful present for him. It is rare for a book to touch me on so many levels, but this one did. Thanks.

Personally Know the story. Know the family. Posted on this
site last week. Live in Hopkins urban renewal area,under
eminent domain toward the creation of Hopkins Biotech Park.

A little disappointed that you have chosen to censure
comments. Speaks volumes concerning your openness to
free speech and holding Hopkins accountable for this
families' entrenched unaddressed poverty.

Sorry. You may make the money, may get the acclaim, but
you definitely missed the karmic mark.

namasate

Sorry, Nia, but no one is censoring comments here. They all go up. And have a look at The Henrietta Lacks Foundation, which I started and am donating portions of the book's proceeds to - the descendants of Henrietta Lacks are the primary beneficiaries, and it will provide scholarship money for them to go to school, help with health care, etc. You can learn more about it at http://www.henriettalacksfoundation.org

Nia, I also write a blog here at the ScienceBlogs network and we have all been having issues with some comments from our readers not showing up. Also, if you include a URL in your comment, spam filters sometimes will hold it up from being posted until the author manually approves it.

And even though you personally know the story, I encourage you to read Rebecca's book at some point to understand just how committed she was to telling the story of Ms. Lacks and the entire family - and telling the story *with* the family, most importantly. She pulls no punches about who might be accountable and exposes every step of the history for all to see. She is also deeply devoted to being sure that Henrietta's descendants are recognized appropriately.

WoW... I was just at the Diversity Alliance for Science Event. It was really awesome to hear Skloot speak at the podium for a good 20 minutes. Skloot you will touch many different hearts in so many different way's. Thank you for staying committed on getting this book done. FYI-I have not read the book YET but, I sure will read this one.. And I don't even like to read..LOL.. And no I'am not even into Science.. But, maybe this will strike something in me.

Countdown to The Immortal Life of Henrietta Lacks & Press Roundup

rskloot — Tue, 26 Jan 2010 17:09:34 +0000

Countdown to The Immortal Life of Henrietta Lacks & Press Roundup

After ten long years, the serious countdown has begun for the publication of my book, The Immortal Life of Henrietta Lacks, which will be on sale nationwide exactly SEVEN DAYS from today. I've been posting about my impending book tour, and all the great coverage the book has been getting, on Twitter and Facebook, but thought I'd also post a bit of a press round up here, and an update, for those who (gasp) don't spend all of their time in those places.

If you don't know what my book is about: it tells the story of a poor black tobacco farmer whose cancer cells -- taken without her knowledge -- became one of the most important tools in medicine, with disastrous consequences for her family. Please take a moment to read the full description of the book here.

So far, it's gotten incredible pre-publication press, for which I am very thankful: There is a big excerpt of the book in the February issue of O, the Oprah Magazine, as well as a small one in Publishers Weekly. The current issue of Wired has this great visual map showing the myriad ways HeLa cells have contributed to science, and the current issue of Popular Science features The Immortal Life as its book of the month, and The Five Reasons Henrietta Lacks is The Most Important Woman in Medical History. The LA Times named mine as A Face to Watch in 2010, and the Chicago Tribune said, among other things that, "The Immortal Life of Henrietta Lacks, to be published next
month by Crown, beautifully epitomizes what's so wonderful about
today's science writing for a lay audience." The Immortal Life has been chosen as a Barnes and Noble Discover Great New Writers pick for spring of 2010, and it's gotten starred reviews in Publishers Weekly, Kirkus, Library Journal and Kirkus. It's also gotten some really wonderful blog reviews, for which I'm very grateful.

And there's more to come soon: I'll be featured on Fresh Air with Terry Gross on February 2nd (check for local air times here), then Weekend All Things Considered on 2/6 (check for local air times here), and the Bob Edwards show soon after that. The Immortal Life will also be featured in Essence, Discover, Nature, Better Homes & Gardens, Vogue, Mother Jones, Smithsonian.com, AARP, Huffington Post, New York Times Book Review, Washington Post Book World, and more. To read all of the coverage to date, visit the "press" page of my website.

For those who missed the news of my book tour saga ... have a look at this article, The Immortal Book Tour, about my decision to organize a grassroots book tour for myself, which starts MONDAY with this public launch event, which I'm very excited about. I will be on the road speaking at universities, libraries, museums and bookstores nationwide from next Monday until June 1st (how does a person pack for such a trip? I have no idea!). Please have a look at my full tour schedule to see if I'm coming to your town, which I probably am, and mark your calendars accordingly (events being added regularly, so please check back).

For those who want to follow what's going on with the book and the tour: I will be posting stories from the road here. To keep up with news related to the book, subscribe to the news updates on my website. Facebook is a great way to follow what's going on with me, so you can friend me there, and/or you can follow news about the book by becoming a "fan" of Henrietta Lacks.

I'd be remiss if I didn't point out that the book is now available for
pre-order. Quite a few wonderful bloggers have written posts (like this one)
about why it's important to pre-order my book if you're planning to buy
a copy (and I didn't even ask them to do this! As I said, I've been
very lucky, and I'm very thankful.) So go to your favorite indy store
or visit your favorite online store, order your copies, and please
spread the word about my book, and my tour.

Photo credit here.

rskloot Tue, 01/26/2010 - 12:09

Tags

race and medicine

Publication News and Follow Ups

Good luck on your book sales: Towards that end I purchased the book at amazon.com, it ships in February

If people can, also try to get hold of Adam Curtis' 1997 documentary on Henrietta Lacks called The Way of All Flesh: http://bit.ly/aquzNJ

It was the first time I'd heard of the amazing story.

archive.org still has a copy as well: http://bit.ly/cCX63r

Wowowowowow!!!! You fact-checking, self-branding, barnstorming, literary Goddess!!!

Last night driving home from work I heard the rebroadcast of your interview with Bob Edwards. As luck would have it, I was on my way to my bookclub meeting; we agreed to add THE IMMORTAL LIFE OF HENRIETTA LACKS to our list for May. Our newest member is a retired geneticist who has worked with hela cells in the lab. Best of luck to you!

Bob Edwards in the morning. The book downloaded on my Kindle later that morning and off I go.
What a story.
Karen Lucey

And one more post. I forgot about the clinical trial at NYU Hospital 9 years ago when I had stage 3 melanoma. After a little research yesterday, I am also a receiver of HeLa cells from the 2 years of vaccine therapy. How honored I feel.
Still alive!
Karen Lucey

Good luck on your tour. I hope you are visiting Chicago in June, it's a great event and would love to get an autograph!

Get a Free Copy of The Immortal Life of Henrietta Lacks (aka HeLa), While Supplies Last

rskloot — Thu, 05 Nov 2009 08:15:16 +0000

Get a Free Copy of The Immortal Life of Henrietta Lacks (aka HeLa), While Supplies Last

Calling all academics: If you'd like a free advanced copy of my book, The Immortal Life of Henrietta Lacks, get thee to Random House's academic blog and request a copy quick, while supplies last (which probably won't be long at the rate things are going). See below for more information on the book, and advanced praise. Added bonus: If you teach the book this spring, you can also get me to come speak at your school/in your classes as part of my book tour.

Here's Publishers Weekly on The Immortal Life of Henrietta Lacks:

Science journalist Skloot makes a remarkable debut with
this multilayered story about "faith, science, journalism, and grace."
It is also a tale of medical wonders and medical arrogance, racism,
poverty and the bond that grows, sometimes painfully, between two very
different women--Skloot and Deborah Lacks--sharing an obsession to learn
about Deborah's mother, Henrietta, and her magical, immortal cells.
Henrietta Lacks was a 31-year-old black mother of five in Baltimore
when she died of cervical cancer in 1951. Without her knowledge,
doctors treating her at Johns Hopkins took tissue samples from her
cervix for research. They spawned the first viable, indeed miraculously
productive, cell line--known as HeLa. These cells have aided in medical
discoveries from the polio vaccine to AIDS treatments. What Skloot so
poignantly portrays is the devastating impact Henrietta's death and the
eventual importance of her cells had on her husband and children.
Skloot's portraits of Deborah, her father and brothers are so vibrant
and immediate they recall Adrian Nicole LeBlanc's Random Family.
Writing in plain, clear prose, Skloot avoids melodrama and makes no
judgments. Letting people and events speak for themselves, Skloot tells
a rich, resonant tale of modern science, the wonders it can perform and
how easily it can exploit society's most vulnerable people.

- Publishers Weekly, Starred Review

rskloot Thu, 11/05/2009 - 03:15

Tags

History of Science and Medicine

Book Related

HeLa

Science Writing

Rebecca, will you be doing a book signing at a Memphis bookstore?

Yeah, I use HeLa's. But I think those Chinese hamsters deserve a biography, too. They do a lot of the heavy lifting. :-)

The development of Hela cells is not a tale of how modern science can "exploit societyâs most vulnerable people." Ms. Lacks died of her advanced cervical cancer, so I'm not sure how culturing her biopsy was exploitation. The law says that a person's discarded tissue and cells are not their property. So, if there was a consent form there would be no issue here, right?

Ms. Lacks did not donate her tissues, so why she should be honored for something she had no cognizant involvement in initiating or developing. It was pure bad luck that her cells would grow well in vitro. She deserves as much or little recognition as the many thousands who have donated biopsies, tissues, organs or bodies either knowingly, or unknowingly to the advancement of science.

I think that commenter P (#3) may underestimate the exploitation of Ms. Lacks and the Lacks family as well as the true contribution of Ms. Lacks's biopsied tissue. As I've said elsewhere, even I thought I knew the whole HeLa story until I read a pre-print of this book.

One has to truly grasp the medical attitudes toward African Americans in the 1950s, a history of mistreatment and exploitation that extends back to slave ships. That Ms. Lacks was put in a position to have bits of her cancer excised for cell culture attempts may not seem offensive by today's standards where we each are likely to have tissue samples in repositories somewhere. But one must follow this event and the subsequent actions of the medical establishment to secure further tissue samples and information from Lacks family members without any consideration, compassion, or simple common decency. I would encourage P to read the book when it comes out and then reconsider if the Lacks family was not exploited.

As for the cells themselves, yes, yes, Ms. Lacks did not give up her tumor tissue because she intended for the cells to be propagated and studied worldwide - her tissue was taken to the lab unknowingly and without consent. But cultivation of the first immortalized human cell line opened the door to understanding how this could be done for more intractable cells in culture. Go back and read some of the 1950s papers by Ted Puck, Richard Ham, and Harry Eagle on the requirements for mammalian cell growth in vitro. Many of these papers using HeLa cells appeared in Science, Nature, and J Exp Med - certainly not inconsequential journals.

But let's step back for a moment as humans who stand on the shoulders of our forebearers: how can you look back on the breadth of discoveries enabled by the availability of HeLa cells and not feel some debt of gratitude toward this woman? How can one not feel compelled to honor her suffering and that of her family? For me, that is reason enough for this story to be told with reverence and respect.

I think it's disgusting that you are STILL stealing from this woman. A foundation to educate sciencists? You mean the kind that stole her body parts in the first place? How does this help the family of Henrietta Lacks? Too many people have already benefited from this unfortunate woman. Why do you deserve profit when her family doesn't?
I hope you never make a dime! YOU ARE AS EVIl as those who came before you. That's why you're not religous. You are as soul-less as your slave owning ancestors! I wish you the same Hell that I hope they are all roasting in~!

Sherilyn: You have misunderstood the foundation entirely. Read the description at www.henriettalacksoundation.org. The foundation is providing scholarship money for descendants of Henrietta Lacks -- this money goes to her family, and others like them who want to study science but can't. This is something that Henrietta's family is benefiting from directly.

P and Sherilyn both demonstrate either unwillingness to read what has been written or lack of reading comprehension of what they have read. Between the two of them, I might be inclined to have more sympathy for Sherilyn, since there is more historical reason to be suspicious of exploitation whereas P's lazy who-gives-a-shit attitude is really quite inexcusable.

Following on from Zuska, it's especially inexcusable because the entire reason we're having this discussion is that there is now a book that lays out the story very clearly. Reacting to an opportunity to rectify your ignorance with knowledge by digging your heels in and loudly repeating your uninformed stance is the tactic of a 6-year-old.

This book is not on my "must read" list... right after the USMLE

This book is ***now** on my "must read" list... right after the USMLE

*** what a horrible typo!

Court Upholds Rights of Scientists and Patients to Challenge Gene Patents

rskloot — Mon, 02 Nov 2009 17:23:11 +0000

Court Upholds Rights of Scientists and Patients to Challenge Gene Patents

Some interesting news about the breast cancer patent lawsuit I wrote about for Slate's Double X Magazine a few months ago: A federal district court has just agreed to hear the case. When the lawsuit was first filed, many legal experts I talked to said they were sure the case would get thrown out of court for it's unusual approach, namely that it claims that the practice of patenting genes is unconstitutional See my story about the case here. Filings and other documents related to the case available here. And see below for the full press release about today's news:

Court Upholds Right of Scientists

and Patients to Challenge Gene Patents.

FOR IMMEDIATE RELEASE

November 2, 2009

NEW YORK - A federal district court
ruled today that patients and scientists can challenge patents on human
genes in court, allowing a lawsuit challenging patents on two human
genes associated with hereditary breast and ovarian cancer to move
forward.

The lawsuit was filed by the
American Civil Liberties Union and the Public Patent Foundation
(PUBPAT), a not-for-profit organization affiliated with Benjamin N.
Cardozo School of Law. The groups charge that the patents are illegal
and restrict both scientific research and patients' access to medical
care, and that patents on human genes violate the First Amendment and
patent law because genes are "products of nature."

"We hope this challenge is the
beginning of the end to patents on genes, which limit scientific
research, learning and the free flow of information," said Chris
Hansen, a staff attorney with the ACLU First Amendment Working Group.
"No one should be able to patent a part of the human body."

The lawsuit, Association for Molecular Pathology, et al. v. U.S. Patent and Trademark Office, et al.,
was originally filed on May 12 in the U.S. District Court for the
Southern District of New York on behalf of breast cancer and women's
health groups, individual women, geneticists and scientific
associations representing approximately 150,000 researchers,
pathologists and laboratory professionals. The lawsuit was filed
against the U.S. Patent and Trademark Office (USPTO), as well as Myriad
Genetics and the University of Utah Research Foundation, which hold the
patents on the BRCA genes. The defendants asked the court to dismiss
the case but today's ruling allows the lawsuit to proceed.

Because the ACLU's lawsuit
challenges the whole notion of gene patenting, its outcome could have
far-reaching effects beyond the patents on the BRCA genes.
Approximately 20 percent of all human genes are patented, including
genes associated with Alzheimer's disease, muscular dystrophy, colon
cancer, asthma and many other illnesses.

The court noted the significance of
this case. The court's opinion stated, "The widespread use of gene
sequence information as the foundation for biomedical research means
that resolution of these issues will have far-reaching implications,
not only for gene-based health care and the health of millions of women
facing the specter of breast cancer, but also for the future course of
biomedical research... The novel circumstances presented by this action
against the USPTO, the absence of any remedy provided in the Patent
Act, and the important constitutional rights the Plaintiffs seek to
vindicate establish subject matter jurisdiction over the Plaintiffs'
claim against the USPTO."

"We look forward to proving in court
that human gene patents should never have been granted in the first
place," said Daniel B. Ravicher, Executive Director of PUBPAT and
co-counsel in the lawsuit. "Companies should not able to own the rights
to a piece of the human genome. Specific tests or drugs can be
patented, but not genes themselves."

The specific patents the ACLU is
challenging are on the BRCA1 and BRCA2 genes. Mutations along the BRCA1
and 2 genes are responsible for most cases of hereditary breast and
ovarian cancers. Many women with a history of breast and ovarian cancer
in their families opt to undergo genetic testing to determine if they
have the mutations on their BRCA genes that put them at increased risk
for these diseases. This information is critical in helping these women
decide on a plan of treatment or prevention, including increased
surveillance or preventive mastectomies or ovary removal.

The patents granted to Myriad give
the company the exclusive right to perform diagnostic tests on the
BRCA1 and BRCA2 genes and to prevent any researcher from even looking
at the genes without first getting permission from Myriad. Myriad's
monopoly on the BRCA genes makes it impossible for women to access
alternate tests or get a second opinion about their results and allows
Myriad to charge a high rate for their tests.

"The patents on BRCA 1 and BRCA 2
restrict women's access to genetic testing and interfere with their
medical care," said Sandra Park, staff attorney with the ACLU Women's
Rights Project. "We hope that at the conclusion of this lawsuit, the
court declares the patents unconstitutional and invalid."

Several major organizations,
including the American Medical Association, the March of Dimes and the
American Society for Human Genetics, filed friend-of-the-court briefs
in support of the challenge to the patents on the BRCA genes.

Attorneys on the case include Hansen
and Aden Fine of the ACLU First Amendment Working Group; Park and
Lenora Lapidus of the ACLU Women's Rights Project; and Ravicher of
PUBPAT. Tania Simoncelli, the ACLU's science advisor, provides expert
guidance on the case.

More information about the case,
including an ACLU video featuring breast cancer patients, plaintiff and
supporter statements and declarations, today's decision and the legal
complaint, can be found online at: www.aclu.org/brca

rskloot Mon, 11/02/2009 - 12:23

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Patent Dispute Prevents Patients From Getting Promising Drug for Lou Gehrig's Disease

rskloot — Sun, 17 May 2009 08:29:56 +0000

Patent Dispute Prevents Patients From Getting Promising Drug for Lou Gehrig's Disease

Speaking of the debate over patents interfering with medical care, there's a story in today's New York Times that mentions the drug Iplex, which has shown promise for treating Lou Gehrig's disease -- a deadly and thus far untreatable degenerative disease (also known as amyotrophic lateral sclerosis).

From the article:

Iplex ... is believed to protect the motor neurons whose
death leads to paralysis in A.L.S. Some patients had persuaded their
doctors to prescribe the drug when the F.D.A. approved it in late 2006
for children with growth deficiencies. "I started on Tuesday," Debbie Gattoni, an A.L.S. patient in New Jersey, had written on a Web discussion forum, "and on Sunday, I noticed that my right index finger, which was bent, was straightening and moving on its own."
But
almost immediately, the drug's maker, Insmed, lost a patent
infringement lawsuit to a biotechnology firm that was already selling a
drug for short stature that had similar properties. Iplex , however, was thought to be more potent for treating A.L.S. Insmed agreed to pull its drug off the market. Only the Italian Health Ministry, which had begun to distribute the drug to A.L.S. patients under a compassionate use program, could continue to buy it ... [but] only Italian citizens could receive Iplex through the program.

This situation is quite different from the breast cancer gene patent situation I wrote about in my recent Slate Double X column -- the Iplex dispute is over drugs, which are clearly inventions, and no one is questioning the legality of drug patents. But it does raises some relevant questions about the intersection of patents and medical care.

rskloot Sun, 05/17/2009 - 04:29

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The FDA posting is a pretty good summary of the evidence (http://www.fda.gov/cder/drug/infopage/mecasermin_rinfabate/default.htm). This page also links to the Italian summary and a statement from the sponsor company. In the FDA's review of available evidence, Iplex was not significantly better than placebo in any of 5 controlled trials, and in 2 of these it was associated with a numerically higher death rate than placebo (though not statistically significant). Take a close look at the survival curve for the japanese study. The current round of enthusiasm is set of by the sponsor company presenting new uncontrolled data on a small cohort that looks promising.

Huh, that's interesting. Thanks for posting. Will take a look.

Thanks for blogging about this, Rebecca.

As you say, "it does raise some relevant questions about the intersection of patents and medical care".

An informative link supplied already c/o David which I've added to this thread of the ALSTDI Forum:- http://www.als.net/forum/default.aspx?g=posts&m=315100ñ»

I'm not sure I understand. Why isn't the patent holder simply demanding a cut of the profits, or else manufacturing the drug themselves?

Sklooty! Come back!

Hi, again, Rebecca, I'm so glad to read not only this blog entry, but the article in Slate. I was appalled when this gene patenting began with the Human Genome Project. But your Slate article give great reasons why it's an inhuman practice, and great examples of other such inhuman practices. Problem is the "Bush" Court. Gotta up my ACLU donation.

Thanks for this post. My friend living near the Eiffel Tower may need to look into this. However, I am skeptical at drug companies and their promises. I wonder if this will be another one of those "lifetime treatments" or cures.

That's lame, those patients need those durgs, I find it absurd that patents are preventing it.

I can only agree with what has already been said. But, I figure by posting, I'm rewarding the author with greater response numbers, which in turn will lead to more posts of a similar nature. Thanks for posting this.

New Breast Cancer Gene Lawsuit Aims to End to All Gene Patenting. Will it Succeed?

rskloot — Fri, 15 May 2009 14:29:48 +0000

New Breast Cancer Gene Lawsuit Aims to End to All Gene Patenting. Will it Succeed?

Earlier this week, the American Civil Liberties Union and several other groups filed suit against Myriad Genetics -- the company that holds the patent on the breast cancer gene. They're hoping to get the breast cancer gene patent revoked, but more than that, they're aiming to stop gene patenting all together.

Today, in my new column in Slate's Double X Magazine, I go into the story of the breast cancer gene and the impact the ACLU claims it's had on science and patient care (a hint: it's not good). I also look at the suit itself, the cases that have come before this one, and what they say about the ACLU's odds for success.

I've covered the long history of legal battles over the ownership of human tissues taken from patients
during biopsies (including one case in which a man's cells were
patented and licensed for millions of dollars without his knowledge). But this is the first lawsuit challenging all existing gene patents, which could have a huge impact on science. It's fascinating stuff, and it'll be interesting to see what happens next (Myriad hasn't responded to the suit yet).

I'll keep covering the case as it moves forward. For now, as a bit of follow up, here are a few specific details from the lawsuit that I wasn't able to fit into my article:

I suggest reading the story here, to put the information below in context. Here are a few highlights from the complaint (see: Association for Molecular Pathology v. United States Patent Office):

According to the complaint, scientists believe there may be
undiscovered components to the breast cancer genes that could offer
clues to suppressing them and preventing breast and ovarian cancer. But
since Myriad owns and controls all future discoveries related to the
genes, their patent has removed incentive to do the further necessary research.

Also:

"Myriad maintains the largest database of BRCA1 and BRCA2 data. It does not share the information in that database ... to ensure the widest possible distribution of information about genes and breast cancer."

And:

"Myriad's monopoly has resulted in a disparity in the amount of information known about genetic mutations in BRCA1 and BRCA2 in ethnic groups other than Caucasians."

And:

"Myriad did not perform certain tests that were known to reveal additional mutations that increased the risk of breast and/or ovarian cancer. Myriad prohibited anyone else from offering those tests to patients even though it knew that they would provide women with essential information about their risk of developing life-threatening cancer."

I'm looking forward to seeing what happens next.

Photo credit here.

rskloot Fri, 05/15/2009 - 10:29

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