Following up: Reviews, news, and some HP too!

I’ve come across bits and pieces of information related to two different books I’ve read recently, and thought I’d take a moment to share some links of interest. Plus, a smidge of Harry Potter, because Harry Potter is always worth talking about!

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Immortal LifeFirst, some follow-up regarding The Immortal Life of Henrietta Lacks by Rebecca Skloot:

When I wrote about the audiobook of The Immortal Life of Henrietta Lacks earlier this month (review), I focused just on the book content — what I enjoyed and what I didn’t, my overall impressions, etc. What I didn’t do at that point was to look for information about what has happened since with the family of Henrietta Lacks, the HeLa cell lines and their use in research, and the author of the book, Rebecca Skloot.

One of my questions while listening to the book had to do with the Lacks family. While the book discusses the sad situation of many of the family members, their financial struggles, and their inability to afford health coverage, it was not clear to me whether any of the book’s profits would be benefiting the family. A commenter on my blog was kind enough to mention that the author had started a foundation in honor of Henrietta Lacks, and that made me realize that I should share some of the information I came across here as a follow-up to my review.

First of all, Rebecca Skloot has established the Henrietta Lacks Foundation, to benefit the family of Henrietta Lacks as well as others in need. Ms. Skloot is the president of the foundation’s board of directors, and contributes a portion of her royalties and speaking fees to the foundation as well.

There have also been additional developments in the scientific community in regard to the HeLa genome, the family’s privacy rights in regard to their genetic data, and the ongoing use of HeLa in research.

Some reading links:

Henrietta Lacks Foundation: http://henriettalacksfoundation.org/

New York Times article about the foundation: http://nyti.ms/1BOaypD

The Lacks Family website: http://www.lacksfamily.net/
(includes information on speaking engagements, pictures and videos, and a link for making donations)

Rebecca Skloot’s FAQ page: http://rebeccaskloot.com/faq/
(includes detailed answers to questions about HeLa research, new developments since the book’s publication, the impact on the story, her writing process, and more)

New York Times op-ed piece by Rebecca Skloot (“The Immortal Life of Henrietta Lacks, the Sequel”): http://nyti.ms/17TSE93

There’s a lot more information out there and tons of articles that come up with a simple Google search for “Henrietta Lacks” or “HeLa”. I’m glad that I followed up and learned more, and I hope these links are helpful for those of you who are interested!

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The StorytellerNext, regarding The Storyteller by Jodi Picoult:

The Storyteller (review) is a work of fiction, but its depiction of Holocaust survivors and the narration of one particular survivor’s experiences seem all too real. The book raises a question about guilt and regret; whether evil acts can be outweighed — or at least, counterbalanced — by a life dedicated to helping others. In The Storyteller, a 95-year-old man confesses to a young friend that he was once an SS officer who oversaw the treatment of prisoners at Auschwitz. The friend seeks help from a prosecutor who works to hunt down Nazi war criminals and bring them to justice. In the book, the characters discuss the difficulty of bringing elderly suspects to trial, especially as there are fewer and fewer witnesses still living with each passing year.

I was reminded all over again of the relevance of the issues raised in The Storyteller when I saw an article in the newspaper this week about the trial just getting under way in Germany. The defendent is a 94-year-old man who was a guard at Auschwitz, and is being accused of being an accessory to the murders of 170,000 people.

You can read more about the trial here: http://www.theguardian.com/world/2016/feb/11/auschwitz-guard-trial-concentration-camp-germany-reinhold-hanning

It will be interesting to follow the course of the trial and see the outcome, particularly as there are several similar cases still pending in Germany. I was particularly struck by this fact included in the article: “Of 6,500 SS members who are known to have served at Auschwitz, only 29 were ever brought to trial in Germany. ”

If you haven’t had a chance to read The Storyteller yet, by all means do!

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A final note:

After two serious subjects, I thought I’d end with something completely unrelated and totally upbeat: By now, I’m sure everyone has heard, but just in case…

HP8

Harry Potter and the Cursed Child is being released in book form! *happy dance*

This is NOT another Harry Potter novel, but rather the script from the London stage production. The book will be released on Harry’s birthday (July 31st, for the Muggles out there), and is available for preorder now!

Some news pieces about the book:

From the BBC: http://www.bbc.com/news/entertainment-arts-35539552

From EW — a clarification from J. K. Rowling about what the book is and isn’t: http://www.ew.com/article/2016/02/11/jk-rowling-cursed-child-book

And the Pottermore announcement: https://www.pottermore.com/news/ww-publishing-cursed-child-script-book-announcement

I’d still prefer a trip to the theater in London, of course — but since that’s not going to happen any time soon, I’m tickled pink about the book! Who else is counting the days until July 31st?

Audiobook Review: The Immortal Life of Henrietta Lacks by Rebecca Skloot

Immortal Life

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells–taken without her knowledge in 1951–became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance. This phenomenal New York Times bestseller tells a riveting story of the collision between ethics, race, and medicine; of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew.

The Immortal Life of Henrietta Lacks is a book I’d been hearing about for years, but as I rarely pick up non-fiction, I’d never gotten around to actually reading it. Finally, I decided to give the audiobook a try.

Henrietta Lacks was a poor African-American woman with five children who was diagnosed and treated for cervical cancer in the early 1950s, before finally dying of the disease in 1951. Doctors treating Henrietta removed samples of her tumor during her treatments, and these cells grew in culture at an unprecedented rate, becoming the first immortal cells ever created in medical history.

In the years since, HeLa cells have been used worldwide for medical research, and it is said that without the HeLa line, many of our current medical advances and treatments would not exist.

In The Immortal Life, author Rebecca Skloot explores both the scientific journey of Henrietta’s cells and their impact on modern medicine, and the lives of the family that Henrietta left behind. Amazingly, while HeLa was incredibly important and famous among the scientific community since the early 1950s, it was not until decades later that Henrietta’s family had any inkling that her cells had been preserved and were still being used for scientific advancement.

The author describes Henrietta’s early life and marriage, the birth of her children, and her suspicion around age 30 that something was wrong with her, leading to her treatment at Hopkins and ultimately, her death from a particularly virulent strain of cervical cancer. Henrietta is portrayed as an energetic, spirited woman and a devoted mother, who never fully understood her condition or her treatment.

Henrietta’s treatment at the time was probably not unusual, and there’s no indication that the medical care she received was not up to the standards of the 1950s. Henrietta was not asked for permission to take her cells for study, but again, that was not the practice at the time.

The book has many chapters describing the scientific impact of the HeLa cells, their use, their impact, and their study over the years. The book also covers topics concerning medical ethics, questions still under debate today, such as who “owns” the tissues removed from patients and who can and should profit from their commercialization. Some interesting examples are given, such as cases where millions of dollars in profit are made by the medical industry while the donor patient receives nothing.

Along those lines, we spend quite a bit of time with the Lacks family, most particularly with Henrietta’s daughter Deborah. Deborah becomes Rebecca Skloot’s companion in her quest to understand Henrietta’s life and death, and her spirit and energy infuse much of the book. The author traces their travels together to the family’s rural home and through the bits and pieces of medical records which they manage to uncover. It’s clear that the family received little information about HeLa or what the cells actually were, so that Deborah often referred to them as being parts of her mother still alive, imagining her mother being experimented upon, and becoming agitated over the types of experiments conducted — describing at various times that parts of her mother were shot into space, used to test nuclear bombs, and infected with AIDS (all actually types of scientific work done using HeLa cells).

There’s a lot of fascinating information in The Immortal Life of Henrietta Lacks, but overall, something about this book didn’t quite fit together for me. There are at least two distinct pieces here — the scientific elements related to the HeLa cell line, the use of tissue cultures, and the biomedical ethical issues; and the story of the Lacks family, their hardships, and the impact upon them of the fame of HeLa and the resultant loss of privacy for the family.

The author, in the book’s afterword, states that one of her purposes in writing this book was to bring to life the woman behind the cells, to make it clear to the world that HeLa is more than just nameless cells, but rather the living remnants that once were part of a real woman who had a name, a life and a family. I think the book absolutely succeeds in this regard.

Still, I couldn’t quite decide what the ultimate point was, or what we are to conclude about the scientific and ethical issues raised here. Was it wrong to use Henrietta’s cells for research? I really can’t believe that. Should patients have control over what happens to their tissues? Should patients have a monetary stake in research involving their tissues? What would that mean for ongoing research? These are big issues, but I felt that the nuances became a little muddy when mixed with the story of the Lacks family. It’s wonderful that Henrietta herself is finally getting recognition, but I’m not sure that this case proves anything when it comes to the confusing, often contradictory elements of the bioethical issues.

Regarding the audiobook itself, I question some of the production decisions made regarding the narration. Most of the narration is a straightforward read of the book, but quotes are read by a different narrator, with ethnic accents and dramatization. It’s not just the Lacks family that gets this treatment — a doctor of Chinese descent is read with a heavy Chinese accent, and there are a few others as well. This is a work of non-fiction, and adding this interpretive treatment of the text felt unnecessary to me, and ultimately, it was distracting.

The book itself is organized in a way that feels muddled and confusing. The chapters jump from present to past, from science to personal, and the transitions are quite abrupt. Particularly via audiobook, this jumping around makes the narrative hard to follow, and the logical sequence is occasionally lost.

I did find much of The Immortal Life of Henrietta Lacks quite interesting, and I was moved by the family’s story, particularly Deborah’s. Still, the combination of the two halves of the story didn’t quite gel for me, and the book as a whole wasn’t nearly as satisfying as I’d hoped it would be.

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The details:

Title: The Immortal Life of Henrietta Lacks
Author: Rebecca Skloot
Narrator: Cassandra Campbell, Bahni Turpin
Publisher: Crown Publishing Group
Publication date: February 2, 2010
Audiobook length: 12 hours, 30 minutes
Printed book length: 370 pages
Genre: Non-fiction (science/biography)
Source: Library (Overdrive)