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Detailed Immortal Life of Henrietta Lacks FAQ Page Now Online [Culture Dish]

sb admin — Fri, 02 Jul 2010 08:32:44 +0000

Detailed Immortal Life of Henrietta Lacks FAQ Page Now Online [Culture Dish]

I've been working for a while to develop a Frequently Asked Questions page to answers the most common reader questions about The Immortal Life of Henrietta Lacks. Well, it's now online, and it addresses questions ranging from why HeLa cells are immortal to how the Lacks family is benefiting from the book. It also includes answers to commonly asked publishing questions, like, How do I break into science writing? You can read it online here. If you have burning questions not answered there, leave them in the comments section below -- I'll add to the FAQ as questions arise and time allows.

sb admin Fri, 07/02/2010 - 04:32

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Detailed Immortal Life of Henrietta Lacks FAQ Page Now Online

rskloot — Fri, 02 Jul 2010 08:32:44 +0000

Detailed Immortal Life of Henrietta Lacks FAQ Page Now Online

rskloot Fri, 07/02/2010 - 04:32

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Skloot

I read the book today, and really enjoyed it. I woke up and finished The Man who Loved Only Numbers. Went downstairs for coffee, breakfast and the paper. Finished those and settled down to read your book.

And I did not stop until I finished it later in the afternoon.

So cool that you started with a class in a community college. My younger son took his high school biology at the local community college because the high school program lacked substance (which changed for the better the next year!). My oldest son gets disability services at the community college. I also used the community college to get back to school (including taking the biology course I skipped in high school). Next year my daughter will take community college classes as a high school junior is a state program where motivated students get both high school and college credits (Washington State's Running Start program).

You made Henrietta Lacks and her family real three-dimensional characters. Mrs. Lacks was a real person, a loving mother and someone who deserved so much better. I hope her descendants the best.

I am also so grateful that my daughter has benefited from research by receiving the HPV vaccine series a couple of years ago. She and countless other will be spared the cancer that took Mrs. Lacks away from her young family.

Thank you.

First Experiment to Attempt Prevention of Homosexuality in Womb? Really? [Culture Dish]

sb admin — Thu, 01 Jul 2010 14:50:59 +0000

First Experiment to Attempt Prevention of Homosexuality in Womb? Really? [Culture Dish]

A press release landed in my inbox today with this headline, which raised my eyebrows (as it was obviously intended to do): "First Experiment to Attempt Prevention of Homosexuality in Womb." It starts with this quote from Alice Dreger, a Northwestern University bioethicist: "This is the first we know in the history of medicine that clinicians are actively trying to prevent homosexuality." The release was announcing the publication of a piece at the Hastings Center Bioethics Forum titled, "Preventing Homosexuality (and Uppity Women) in the Womb? -- it was written by the same authors that started quite a stir recently over one researchers use of vibrators in follow up exams with young girls to test whether their clitorises worked after he'd surgically altered them.

The gist: In an
attempt to reverse the effects of a disorder called congenital adrenal
hyperplasia (CAH), an endocrine disease that can result in ambiguous
genitalia and "increased rates of tomboyism and
lesbianism," pediatric endocrinologist Maria New has been giving dexamethasone to pregnant women to see if it will reverse the disorder (the drug isn't approved for pre-natal use, but it's used to treat the disorder itself, which results from a steroid deficiency). Time
magazine recently reported that there are questions about
whether the drug causes birth defects, whether it's being used with proper informed consent, and whether such
off-label experimental drug use should require IRB oversight (as many experts argue that it should, though it doesn't presently). Now Dreger and her colleagues are looking at another aspect of this research, namely, how the scientists involved are portraying homosexuality, what qualifies as "normal" when it comes to masculine vs.
feminine traits, and where exactly this research is going:

Most clinicians who use prenatal dexamethasone for CAH seek
to
prevent the development of ambiguous genitalia. But the New York-based
group of clinical researchers ... suggest that prenatal dexamethasone
can also be used in this population to prevent the "abnormality" of
homosexuality, as well as the
"abnormal" interest these girls tend to have in traditionally masculine
careers and hobbies.

I've been a wee bit busy writing and talking about another big bioethics story (i.e. the one in my book, The Immortal Life of Henrietta Lacks), so I haven't dug into this one, but my gut reaction is that the
headline of the press release strikes me as sensational and misleading: The researchers
are looking at this drug's impact on various aspects of a disorder -- they haven't engineered an experiment in which they're giving this drug to pregnant women in an attempt to prevent homosexuality. (Unfortunately, sensational headline like this lead to other freaked-out headlines like, "Awful Doc Drugs Pregnant Women to Make Their Babies More Girly.") Dreger and her colleagues are concerned that this research is headed in that direction because the scientists involved have said that their studies may apply to
homosexuality in general. Dreger is also disturbed by how this research approaches the idea of biologically "normal" female behavior:

In another paper called "What Causes Low Rates of Child-Bearing in Congenital Adrenal
Hyperplasia?" [New's colleague] writes that "CAH women as a group have a
lower interest than controls in getting married and performing the
traditional child-care/housewife role. As children, they show an
unusually low interest in engaging in maternal play with baby dolls,
and their interest in caring for infants, the frequency of daydreams or
fantasies of pregnancy and motherhood, or the expressed wish of
experiencing pregnancy and having children of their own appear to be
relatively low in all age groups." ... [the paper] suggests that treatments with
prenatal dexamethasone might cause these girls' behavior to be closer
to the expectation of heterosexual norms ... [another paper goes] further,
constructing low interest in babies and men - and even interest in what
they consider to be men's occupations and games - as "abnormal," and
potentially preventable with prenatal dex ...

Hot button issue? Indeed. Dreger has written a detailed post over at Psychology Today that starts with the provocative question, "What's wrong with taking a steroid, while you're pregnant, to try to
increase the odds that your female fetus will someday grow up to be a
straight woman who gives you grandchildren, and not a lesbian daughter
more interested in puppies?" And of course, there's more on this in the full Hastings Center piece, which you can read online here.

(Photo credit here)

sb admin Thu, 07/01/2010 - 10:50

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More on Henrietta Lacks's New Grave Marker [Culture Dish]

sb admin — Mon, 31 May 2010 13:19:24 +0000

More on Henrietta Lacks's New Grave Marker [Culture Dish]

Anyone interested in Henrietta Lacks and the grave marker finally placed on her long unmarked grave this weekend should click here immediately for a beautiful post by scientist David Kroll, who attended the unveiling ceremony. It's filled with beautiful photos of the day, and a tribute to all Henrietta's cells did for science. His photo below shows Henrietta's new headstone in much sharper detail than the one I posted yesterday with the text of the inscription. Visit his post for many more photos of the ceremony, the graveyard, and Henrietta's family.

sb admin Mon, 05/31/2010 - 09:19

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More on Henrietta Lacks's New Grave Marker

rskloot — Mon, 31 May 2010 13:19:24 +0000

More on Henrietta Lacks's New Grave Marker

rskloot Mon, 05/31/2010 - 09:19

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Wonderful work, Rebecca. You should be very, very proud.

If I remember correctly from your book, it was unclear exactly which grave was Henrietta's in the family plot. So has her grave been identified or is the marker placed in the general vicinity of her grave?

Either way, this is a really a wonderful thing to have happened.

Hi. I am in a bookclub and we are reading your book for the month of July. I loved the book and the history in the book. I can't wait to discuss the book with my fellow readers.

Thanks for this. I love that it's shaped like a book.

Speaking of which: Your book knocked my socks off. Thanks for that too.

A Historic Day: Henrietta Lacks's Long Unmarked Grave Finally Gets a Headstone [Culture Dish]

sb admin — Sat, 29 May 2010 14:39:08 +0000

A Historic Day: Henrietta Lacks's Long Unmarked Grave Finally Gets a Headstone [Culture Dish]

Today is a very exciting day: Henrietta Lacks (aka HeLa) has been lying in an unmarked grave since her death in 1951. Today, thanks to Dr. Roland Pattillo at Morehouse School of Medicine, who donated a headstone after reading The Immortal Life of Henrietta Lacks, her grave is finally marked. Below, a snapshot of some members of the Lacks family beside the new marker for Henrietta, and the marker for her daughter, Elsie, which was also unveiled today. Dr. Roland Pattillo is pictured at the far left:

Her stone, in case you can't tell from the picture, is shaped like a book. The text was written by members of the Lacks family. It reads:

Henrietta Lacks, August 01, 1920-October 04, 1951.

In loving memory of a phenomenal woman, wife and mother who touched the lives of many.

Here lies Henrietta Lacks (HeLa). Her immortal cells will continue to help mankind forever.

Eternal Love and Admiration, From Your Family

Many thanks to Melissa Bell for the photo.

sb admin Sat, 05/29/2010 - 10:39

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A Historic Day: Henrietta Lacks's Long Unmarked Grave Finally Gets a Headstone

rskloot — Sat, 29 May 2010 14:39:08 +0000

A Historic Day: Henrietta Lacks's Long Unmarked Grave Finally Gets a Headstone

Her stone, in case you can't tell from the picture, is shaped like a book. The text was written by members of the Lacks family. It reads:

Henrietta Lacks, August 01, 1920-October 04, 1951.

In loving memory of a phenomenal woman, wife and mother who touched the lives of many.

Here lies Henrietta Lacks (HeLa). Her immortal cells will continue to help mankind forever.

Eternal Love and Admiration, From Your Family

Many thanks to Melissa Bell for the photo.

rskloot Sat, 05/29/2010 - 10:39

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Roland Pattillo

That's really great, Rebecca.

Nice work and thanks to everyone involved in correcting this deficit for Henrietta, Elsie, Deborah, and the rest of the Lacks family.

Beautiful tombstones and a lovely picture. I've just started reading the book and am already enthralled.

Sklooty, that is so awesome! And you should be really proud for writing such a fucking great book!

I feel like I bonded with the family after reading the book. I am thrilled that Henrietta Lacks has a memorial to her life.

Got a bit choked up on seeing Henrietta's headstone and the family. Nice to see that recognition is finally coming to that poor woman and her long suffering family.
Congratulations to you, Rebecca, for seeing this through. Restores my faith in humanity :)

Ms. Skloot, if you're not already, you should be proud for the part you've done in giving Lacks and her surviving family the recognition they deserve.

Good.

I'm weeping as I write this comment. Truly a historic occasion! The sentiment on Henrietta's marker is so fitting and beautiful. Thank you, Rebecca, for helping the Lacks family honour the memories of Henrietta and Elsie at long last -- and for helping the rest of us appreciate the woman behind HeLa. Now, if only Johns Hopkins would give the surviving family members free or low-cost health care...

Sklooty, that is so awesome! And you should be really proud for writing such a fucking great book!

Rebecca...you've written a great book! I've just finished and I'm so pleased to see the above pictures. It's criminal that it wasn't done sooner.
Congratulations on a job well done.

An amazing story so well told - thank you for the telling. Its just right and fitting that this story be told to the world as haven't we all had the benefit from Henrietta cells. So pleased that this lady and her family now have the recognition that is deserved

I am thrilled that Henrietta Lacks has a memorial to her life.

Learned about this incredible book thru my Book Club "Brothers and Sisters BC". Her living was not in vain. What a wonderful tribute for her families for generations to come.

very nices article.An amazing story so well told - thank you for the telling. Its just right and fitting that this story be told to the world as haven't we all had the benefit from Henrietta cells. So pleased that this lady and her family now have the recognition that is deserved

HeLa Onscreen: Oprah and Alan Ball to Make Film of The Immortal Life of Henrietta Lacks for HBO [Culture Dish]

sb admin — Thu, 13 May 2010 19:05:29 +0000

HeLa Onscreen: Oprah and Alan Ball to Make Film of The Immortal Life of Henrietta Lacks for HBO [Culture Dish]

Things have been a bit quiet here as I finished up my crazy
four-month-long book tour, and there's much to catch up on. First, some big news just in: Oprah,
Alan Ball, and HBO are going to be making a movie version of my book, The Immortal Life of Henrietta Lacks. This news has gotten quite a bit of
coverage on Twitter and elsewhere, with me fielding questions about the movie,
and various folks voting on who should play which character in the film (not
that I have any control over such things, but it's still fun to think about).

The combination of Oprah, Alan Ball, and HBO is nothing
short of a dream team for me. I've always been a huge fan of everyone involved, and I think HBO is the perfect home for this movie. Several
people have asked why I went with HBO instead of a big screen major
motion picture version, and there are several reasons. HBO makes some of the best and smartest movies
out there these days, particularly when it comes to complex true stories that
mix science, ethics, and real human stories. Check out You Don't Know Jack, the recent HBO film starring Al Pacino as Jack Kevorkian,
and Temple Grandin starring Claire Danes, to name just a few of the most recent examples. It was very important to me that the
film find a home that would do justice to the family's story, the
science, and the scientists -- I have no doubt HBO, Oprah, and Ball will do
just that. And the Lacks family and I will be involved along the way: We'll be consulting on the film. As Ball said in a recent interview
about the HeLa movie, "This is going to be a journey that we'll all remember for the rest of
our lives." I'm very excited for it.

Photo captions: Pictured above left: Oprah.
Pictured above right: Alan Ball.

sb admin Thu, 05/13/2010 - 15:05

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HeLa Onscreen: Oprah and Alan Ball to Make Film of The Immortal Life of Henrietta Lacks for HBO

rskloot — Thu, 13 May 2010 19:05:29 +0000

HeLa Onscreen: Oprah and Alan Ball to Make Film of The Immortal Life of Henrietta Lacks for HBO

Photo captions: Pictured above left: Oprah.
Pictured above right: Alan Ball.

rskloot Thu, 05/13/2010 - 15:05

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Wow! Congratulations! Well earned!

Awesome, Skloot! w00t!

Congrats Rebecca! I can't wait to see it!

I hope you're keeping some creative control. Oprah is infamous for gutting the truth to promote the emotional.

Good luck - the story deserves to be told, and you told it well. I hope the others can find the same respect for truth.

Same here - I found your book a truly breathtaking read and I hope this quality will make it to the film version without compromising the truth and accuracy (too much, adds the realistic and cynical part of me).
But anyway - that's great news!

Simply amazing! Congratulations!!! Not only have you crafted a remarkable book but you have expanded unbelievably on your commitment to the Lacks family to tell their story far and wide.

While you write that you are agnostic, I know you'll understand when I say that Henrietta and Deborah are smiling on you. I can't imagine how wonderful this must make you feel. This is fabulous news!

What Chakolate at #4 said. As much as I admired your book, I'm already pretty sure I don't want to see this movie. But enjoy the money, you earned it.

Sounds like you made a deal with the lesser of the devils. Hollywood would have thrown your book out the window while they made it fit a formula.

Most likely there will still be hard compromises with HBO, but not as devastating to the central ideas in the book.

Nevertheless, congrats for finding that combo of hard work and good luck (to have struck a nerve in the public awareness) that eludes so many authors.

Congratulations! I think the story will make a wonderful movie!

I'm excited about seeing this story on the big screen! This story must continue to be told! Ironically, tonight's episode of Law and Order, "Immortal" is reminiscent to your book. If the movie comes close to the depiction on Law and Order, it will be outstanding.

There is an iron-clad rule in journalism that reporters should never mix the process and difficulties of getting a story into the telling of it. There are many very obvious reasons for this. First among them is the reporter's process detracts from the story. In fact the trouble that author has in running down the story is completely superfluous to the core story. About half of this book is a description of the ways and difficulties the author had in getting the story. It is a shame because it undermines a fascinating story and ruins the book.

@William Metcalf.

What planet are you on? Can you please show me the Iron-Clad Rule Book of Journalism? The only iron-clad rule I know of is to be as transparent as possible and not deceive anyone. Rebecca was painfully honest in all her disclosures and wrote one of the most honest, transparent books I have read in a long long time. So sorry she did not write the book you wanted to read. Maybe you should write that book?

As far as anything detracting from the story and/or her storytelling style "undermining" and "ruining" the book... gosh, I guess all those people buying it and reading it don't know what they are doing, huh. And the fact that Johns Hopkins, and at least one other university, have made it assigned reading for their incoming freshman means that they, of course, are complete idiots too.

Thanks for enlightening us. I used to love this book but now that you have told me it has undermined your vision of another book, I guess I will have to reconsider my opinion...NOT.

@William Metcalf: There is no such rule. I have been a reporter for more than 30 years, and have seen an increasing shift toward narrative journalism that includes the author as a character. This creates a transparency that was sometimes lacking in earlier generations. It also creates memorable prose.

Some of the finest recent books of narrative journalism use this technique, including There is No Me Without You by Melissa Fay Greene and Strength in What Remains and Mountains Beyond Mountains by Tracy Kidder. If you go back to 1991, you'll find Samba by Alma Guillermoprieto, perhaps the most compelling book-length literary journalism ever written about South America. Guillermoprieto, in reporting the life of a Rio de Janeiro favela (shanty town) during the lead-up to Carnaval, chronicles her own decision, midway through the reporting, to move into the favela.

There are many groundbreaking aspects to Skloot's book. The inclusion of herself as a character is not one of them. Reporters have been doing this for at least 20 years.

An iron-clad rule that reporters should never mix the process and difficulties of getting a story into the telling of it? Have you never read any first-person journalism? Very often, the process of trying to get the story speaks volumes about it -- it sheds light on the other characters, the conditions in which they live, their fears, joys, paranoias, etc... The journey as narrative device is a very standard and very effective way of telling a story. Adn I think Rebecca Skloot pulled that off pretty well. Fourteen weeks on the NY Times Best Seller list. Hmmmm.

Just saw the Law & Order ep, and loved the story about the cells. Having read about HeLa on this blog and seen some of the clips of Rebecca on talkshows provided a deeper meaning to this story.

Looking forward to the HBO movie. I can already picture in my mind many of the scenes from the book as they might appear in a movie.

I also saw the recent episode of Law and Order titled "Immortal" where they did a riff on the Henrietta Lacks story. Names and places changed of course.

As we are reading through it, my class has created a website/blog dedicated to this book.
Check it out and feel free to comment!
http://apwh.weebly.com/index.html

I just listened to the latest Radiolab episode, about Henrietta Lacks and her tumour cells. Highly recommended: you get to hear the book's main characters speak, and I was really touched. Somebody should give the singing preacher guy a recording contract.

http://blogs.wnyc.org/radiolab/2010/05/17/famous-tumors/

Beautiful review in the Times Literary Supplement:

http://entertainment.timesonline.co.uk/tol/arts_and_entertainment/books…

"Skloot has written an important work of immersive nonfiction that brings not only the stories of Henrietta Lacks and HeLa once more into line, but also catharsis to a family in sore need of it."

Congratulations, please don't let them stray from the story. This story is so important. I truly enjoyed the book and commend you for your deligent research and staying true to the story and family. HBO is the right partner for this production.

Immortal Life of Henrietta Lacks FAQ#1: How did Skloot learn about HeLa cells? [Culture Dish]

sb admin — Mon, 05 Apr 2010 00:22:17 +0000

Immortal Life of Henrietta Lacks FAQ#1: How did Skloot learn about HeLa cells? [Culture Dish]

I mentioned a while ago that I'll be posting answers to FAQs about my book, The Immortal Life of Henrietta Lacks, as an ongoing series on this blog.

I thought I'd start the FAQs with one of the most commonly asked questions: How did you learn about Henrietta and the HeLa cells, and why did they grab you the way they did? Here is the answer, which I also posted about over on Powells.com's book blog this last week as part of a little guest blogging stint:

I first learned about Henrietta Lacks in the late 80s, when I was 16 and sitting in a basic biology class at Portland Community College
(PCC). My teacher, Donald Defler, mentioned HeLa cells, saying they
were one of the most important tools in medicine, then almost as an
aside, he said, "They came from a woman named Henrietta Lacks, and she
was black." That was the moment I became obsessed with Henrietta. I
went up to Defler after class and started asking questions about
whether her family knew about the cells (they didn't) and what her race
had to do with them being alive, but he stopped me, saying no one knew
anything else about Henrietta, just her name and her race.

Defler, being the good biology teacher he was, suggested I do some
research to see if I could find any information about Henrietta Lacks.
"Write up a little summary of what you find and I'll give you some
extra credit," he told me. Several months ago, when I got the
pre-publication proofs of my book, I called Defler and (much to his
surprise) told him about how that moment in his biology class more than
20 years ago had started me on a path that ended with The Immortal Life. I sent him an advance copy and said, Here's my extra credit summary, Mr. Defler...it's a few decades late, but I
have a good excuse: the information was really hard to find ...

The scene of me learning about Henrietta Lacks for the first time in
my PCC classroom is in the prologue of the book (which you can read
online here). But what's not in the prologue is the backstory behind why Henrietta's story grabbed me.

The year I learned about Henrietta Lacks was the same year
my father got sick with a mysterious illness no one was able to
diagnose. He'd gone from being my very active and athletic dad to being
a man who had problems thinking, and he spent all of his time lying in
our living room because he couldn't walk. It turned out that a virus
had caused brain damage, and he eventually enrolled in an experimental
drug study (he's since written several books
about his experience living with brain damage). Since my father was too
sick to operate a car, I drove him to and from the hospital several
times a week and sat with him while he got treatments. I spent much of
my 16th year sitting in a hospital watching my father and other
patients be used as research subjects. In the midst
of that, when Defler mentioned that Henrietta's cells had been growing
in labs decades after her death, the first questions I asked were, Did she have any kids? How did they feel about her cells being used in research? I think I asked those questions in part because I was wrestling with the emotions associated with watching my father's
experience as a research subject.

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sb admin Sun, 04/04/2010 - 20:22

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