Skloot Launches FAQ Blog Series Answering Reader Questions About The Immortal Life of Henrietta Lacks

i-6e9d9b9eca80e21c85ae51638f9b66d8-phpJjtjUQAM-1.jpgAs some of you may have noticed, things have been a weeeeeeee bit quiet here at Culture Dish.  This is what happens when a person embarks on a totally insane book tour.  I've been on the road for two months straight since the publication of The Immortal Life of Henrietta Lacks, giving talks, signing books, meeting readers, and doing lots and lots and lots of interviews for TV and radio (talking to folks like Stephen Colbert, Jim Axelrod of CBS Sunday Morning, Terry Gross, and many others).  This has been a wonderful experience, which I will be posting about soon (complete with videos and photos), but it has, amazingly, left little time for blogging.  I hope to change that, though I will be on the road until June talking about the book around the country (full schedule is online here, so check it to see if I'm going to be in your area).

I'm starting a series of posts responding to frequently asked questions about the book. I've been getting a flood of email with questions that I haven't been able to respond to individually, so I thought I would start addressing them here, and link to them as a way to fill my now empty FAQ page

So ... if you have any questions you'd like me to address related to the book, please post them here in the comments section, or email them to me. Obviously it will take a while to respond to them all, but I plan to answer as many as I can.

Photo credit here.

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Are there any plans of creating a children appropriate adaptation of this novel? I teach 8th graders, many who are very interested in the book, but cannot comprehend the content.

By Jessica Oliver (not verified) on 21 Mar 2010 #permalink

Since your book release has the foundation you created for the Lacks family had a lot of outside donations? I would love to know how one could donate to the family if they wanted to

By Stephanie Higgins (not verified) on 21 Mar 2010 #permalink

Rebecca -- As a fellow science-writer-historian type, I have a technique question. I'd like to know more about how you gathered info for recreated scenes. Clearly in some cases you had your recorder or computer or notebook with you for notes. But in others -- particularly when you first drive into a place or someone bursts into your presence, for instance -- it seems more likely that you're working from memory. So do tell -- what's your working technique for gathering the sort of detailed dialogue that appears throughout the book?

I'm almost finished reading your book, and find it difficult to put down. A great, tragic story wonderfully told. It would be fabulous, as someone already suggested, to have this as a children's book. Perhaps one in the "Scientists in the Field" series?

By Mary Severinghaus (not verified) on 21 Mar 2010 #permalink

So, my professor said that I should change my topic on my research paper, because he said it's too new of a topic(as said before when I was asking questions a couple of weeks ago) but for some reason, I can not stray from this topic. I absolutely love it! I hope to see you at Memphis this fall!!!! This book is wonderful :)

By Heather Graves (not verified) on 21 Mar 2010 #permalink

Great questions -- I'll address them in my FAQs.

Jessica: Your question is an easy one: Yes. I'm working on that this very minute, in fact. Also a HeLa book for younger children. Thanks for asking!

Stephanie: I'll address your question more in detail in my FAQs, but for now, you can find out more about the Foundation on its website, where you'll also find a link to the Lacks Family's site," where people can donate directly to them.


Two questions, one more improbable than the other, that I wanted to ask you before I post a short article on your book on my blog.

1) Is it even remotely possible that HeLa cells used in testing polio vaccines somehow contaminated the vaccines themselves with a mutant cancer gene? I was born in central New York in the 50's. Of my family: 3 of four children have had cancer. Am finding more and more my age from the area who were diagnosed in their 40's. Just ran through my head while reading....stranger things have happened!

2) Just confirming: scientists can no explain how/why HeLa cancer cells are still living, correct?

3) Is it possible to pinpoint what chemotherapy agents for breast cancer were HeLa was used in their development? Taxol? Taxotere? Xeloda? Or are/were HeLa cells and other cell lines used in testing various cancer treatments?

Thanks so much Rebecca. Your journey following this story and the resulting book: extraordinary.

Jody Schoger

I am a Journalist of China Youth Daily, which is one of the most famous newspapers in China with readers all around the country. I read a news report introducing your book about HeLa cells recently and I was totally attracted. It is such a great book that I would like to introduce it to our audience as quickly as possible.
Since now in China people can not get this book yet, would you please to answer some questions by E-mail to share more details about the story?
I am looking forward to hearing from you. My
Best regards.

By Fu Yannan (not verified) on 25 Mar 2010 #permalink

I am one of the people who won your book through the draw here on scienceblogs. I am very excited to read it and have been looking forward to its arrive for a while now.

I guess I should try to write some questions down as I read it and post them here. Too bad you are not coming to Ottawa on this book tour. Good luck though, it looks rather nutty.

On page 2 of your Prologue you give some estimates about the numbers of HeLa cells that have been produced. In particular you give a figure of 50,000,000 metric tons. You also say that if placed end to end these cells would span 350,000,000 feet. Some simple math seems to show that these figures canât both be correct. A metric ton is 1000 kilograms or 2,204.6 pounds. Using the given values leads to one linear foot of cells weighing nearly 314 pounds which is not possible

Rebecca--I attended the seminar at the VA Festival of the Book in which you were one of the panelists. I was much impressed by your determination. On my blog, I have mentioned your struggles to publish and posted a link to your book at Best wishes to you. Vonnie

Ms. Skloot--
I read lot of books. Rarely has a book grabbed me like this one. I was absolutely fascinated-- especially by your very caring descriptions of the Lacks family. I was absolutely thrilled when I got on the Foundation's website and discovered you were actually coming to my smaller community in Grinnell, Iowa, in October.

By Doug Cameron (not verified) on 28 Mar 2010 #permalink

I too was completely captivated by your book. I would like to applaud your efforts in telling this very poignant story of the Lacks family. It seems unbelievable that even today we do not have control over our tissues once taken from us. As in the case of HeLa, it is wonderful if they are used for curing diseases and the science of DNA but leaves the ethical question of where does one draw the line. The damage of HeLa to the Lacks family was and is profound. You did a fantastc job of making that anguish real for the reader. Thanks for telling this compelling and profound story.

By Catheen Brenner (not verified) on 28 Mar 2010 #permalink

I completely agree with you, Noah. What you say explains the current lack of demand for access to the literature. I wonder if science journalism of tomorrow will still be that way? If the current trend of slashing university jobs continues in the face of rising numbers of students, there will be ever increasing competition for the few remaining jobs. In this not very unlikely not-too-distant future scenario of overwhelming pressure to hype any small advance, will journalists still be the willing enablers of hype?
Of course, that scenario doesn't have to materialize, but right now you don't need to be an Einstein to extrapolate the figures...

I am so taken with this story. I heard you on NPR and immediately put my name on the waiting list! I just got it over the weekend and can barely stop reading it. I so hope that it has opened "the doors of health care" to this family - has Johns Hopkins (or any other health care provider), at the very least, offered free health care and medication to Henrietta's survivors? (I'm nearly finished with the book and just finished the piece about Deborah's medications). It only seems humane that Johns Hopkins acknowledge the family, and if not monetarily, at least with health care and medication.

By Lois Plantefaber (not verified) on 30 Mar 2010 #permalink

What happened to Deborah's daughter, LaTonya?

By Elizabeth (not verified) on 01 Apr 2010 #permalink

HPV-18 is sexually transmitted. Since Henrietta's husband obviously gave her syphilis and gonorrhea, it seems likely that he also gave her the virus that caused her cervical cancer. Much as I loved your book, I couldn't help but wonder about David's pivotal role in Henrietta's illness and death, something you implied but did not overtly address. Was this too sensitive and difficult an issue to deal with, especially for the surviving members of the Lacks family?

This story was waiting to be told for so many years. Thank you for bringing it to us. Has the success of this book allowed you to help the family financially?

In the Afterword in The Book, Ms. Skloot refers to a pending lawsuit by the Havasupais against Arizona State University for using blood samples for tests that had not been revealed to the donors. The following announcement was in the on-line edition of the NY Times. Imagine what just a fraction of this settlement could do for the Lacks family.

A protion of the announcement:
Acknowledging a desire to âremedy the wrong that was done,â the universityâs Board of Regents on Tuesday agreed to pay $700,000 to 41 of the tribeâs members, return the blood samples and provide other forms of assistance to the impoverished Havasupai â a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used.

It was great meeting you today, Rebecca! I have one question: the claim about 50 million metric tons of HeLa cells being produced to date seems quite exaggerated. Can you quote your source? It seems like this bit of information caught attention of many people, but I feel it's better to stick to more accurate (even if only estimated) numbers. Thank you for writing this book!

It was great meeting you today, Rebecca! I have one question: the claim about 50 million metric tons of HeLa cells being produced to date seems quite exaggerated. Can you quote your source?

Hello there, what an exceptional book, exceptional family and story.

Question: Looking at the photos on the Flickr stream on your website, I was hoping to see the one of Elsie age 6, that you reference in the book, Chapter 30, when you first walk into Zacariyyah's apartment. Is there a photo of that one we can see? thank you.

By Jennifer K in … (not verified) on 17 May 2010 #permalink

I am wondering why the incorporation papers for the Henrietta Lacks Foundation do not specifically mention the Lacks family, other than in the name of the foundation. I understand that you want to keep your options open as to how the funds will be used, but it looks like it is theoretically possible that none of the funds would be used for the education of Henrietta's descendants. I wish you luck with the administration of the foundation; it has the potential to do a lot of good.

Rebecca my concern is similar to the one above - the book is highly acclaimed, you are on a whirlwind book tour - how do you see your responsibility towards the Lacks family now that you are becoming famous yourself? - how do you ensure that they are not objectified? The foundation has no Lack listed on the board and you do not specify what portion of profits go to the foundation?

I am puzzled as to which is correct, your estimate of the weight of HeLa cells produced to date:

"... theyâd weigh more than 50 million metric tons"

or Wikipedia's:

"Scientists have grown some 20 tons of her cells"?

Those are two really wildly differing estimates!

By Nicholas Penney (not verified) on 29 Jun 2010 #permalink

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

1. Congrats on a masterpiece of research, writing, & absolutely amazing commitment to your subject.
2. However, one issue that I felt was not fully addressed was why, after Henrietta's death, her children were handed over to "that hateful woman," Ethel. Prior to her death, I felt you had painted a very positive portrait of Henrietta, her sister, Gladys, and cousins Sadie & Margaret - as a group of VERY close-knit women who supported each other completely in life (& knew what an awful choice Ethel would have been). Do you know why one or more of these relatives didn't step in and save those poor children from true torture?
3. A small point, but to all of your fact-checkers (pp. 332 - 333) Ambien is NOT a narcotic. It is sometimes classified as sedative or, more correctly, as a hypnotic.
4. Did your scientific research help you better understand your father's CFS (which I share)?

Thanks again for devoting so many years of your life to this amazing story.

By T. Morrison (not verified) on 29 Jun 2010 #permalink

Thanks for the questions. I've now answered many of them on the FAQ Page of my site. A few not answered there:

Bob: Both of the figures are correct, it's just that they're from different time periods. The figure saying they'd wrap more than 3-times-around-the-world was calculated long ago, and with no follow up. It would be far more than that now, so best we can say on that one is that they'd wrap around more than 3 times. The 50 million metric tons figure was calculating how many cells could have ever grown, so it was a forward looking figure when it was calculated. The details of how that worked are in the notes section of the book.

KaKa: See the answer above. The 50 million metric tons figure is not exaggerated, and the method for calculating it is in the notes section of the book.

Nicholas: The figure on Wikipedia is incorrect, it's 50 million metric tons.

Jennifer: That photo is actually in the photo insert of the book.

Tessa, Lisa, Gotkin: Only a few of the documents for the foundation are online at this point. The documents laying out the mission of the foundation very clearly include the Lacks family. Once the foundation is approved for its 501c3 status, the papers related to that will go online as well. For now, we're waiting, which can take more than a year. The key thing is that the Lacks family is intimately aware of how the Foundation is doing, they are pleased with it, and they do not feel I've exploited them in any way. The Henrietta Lacks Foundation is already helping one Lacks descendant get the tutoring necessary to pass college entrance exams, and it will be helping several Lacks descendants go to school starting this fall. I will post updates on the foundation with details of all of that when the information is public.

How can one become involved with this cause and the foundation? I would love help the foundation, or wear a t-shirt or a bumper sticker or a poster to bring this plight to the attention of everyone I come in contact with. I just want to do SOMETHING to help!!

I think I found a typo. I think you inadvertently reversed the last two words in the following sentence in your FAQ:

"Many of the difficulties Henriettaâs family faced came down to issues class:..."

Also, please note that Johns Hopkins had specifically provided that the hospital that was to bear his name should treat persons of color as well as whites. That was unusual for its time.

Sam Hopkins

By Sam B Hopkins (not verified) on 02 Jul 2010 #permalink

Thanks for catching that typo, Sam. Fixed it. And yes, the history of Hopkins and its relationship to race is all in the book.

Hi Rebecca, what a great book. I'm learning more about cells than I did in high school over 30 years ago! Or maybe I'm re-learning. I was hoping that someone has stepped up and given the Lacks family some sort of medical insurance/plan. Please tell me they have? Will you be on Oprah soon?

How can one become involved with this cause and the foundation? I would love help the foundation, or wear a t-shirt or a bumper sticker or a poster to bring this plight to the attention of everyone I come in contact with. I just want to do SOMETHING to help!!