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The Immortal Life of Henrietta Lacks

Rebecca Skloot

Discussion: May/June 2010

Discussion leader: LynnB

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May/June 2010

The Immortal Life of Henrietta Lacks - Rebecca Skloot
By LynnB · 18 posts · 39 views

last updated Aug 31, 2013 12:15PM

The Devil's Star by Jo Nesbo
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last updated Jan 05, 2013 05:30PM

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What Members Thought

Jan 10, 2017 Antonia rated it it was amazing

Shelves: read-in-2017

What a hero Rebecca Skloot is! And what a book — winner of many awards including the American Association for the Advancement of Science’s Award for Excellence in Science Writing. I am so sorry that this book has stood, unread, in my bookcase for several years.

And the writing is, indeed, excellent! Just what good science journalism ought to be — a lot of complicated science made clear and interesting for lay readers. And all of it done with enormous respect for the subject and, what’s more impo What a hero Rebecca Skloot is! And what a book — winner of many awards including the American Association for the Advancement of Science’s Award for Excellence in Science Writing. I am so sorry that this book has stood, unread, in my bookcase for several years.

And the writing is, indeed, excellent! Just what good science journalism ought to be — a lot of complicated science made clear and interesting for lay readers. And all of it done with enormous respect for the subject and, what’s more important, for Henrietta Lacks and all of her family. Skloot does a fabulous job of balancing the science with the real lives of the Lacks family, and especially with her portrayal of Deborah, Henrietta’s daughter, who is filled with both longing and determination to know her mother. Moreover, the book is well-written on a technical level. As a longtime editor, I tend to be pretty niggly and am easily distracted by grammar gaffes, poor sentence structure, and incorrect word usage. But I breezed through this book without a hiccup. (Okay, just one — when a lectern was called a podium.)

Skloot has worked for many years as a science journalist (BS in biological sciences) and she has a good command of the science she’s writing about. I agree with Science magazine’s review, that the book is “beautifully crafted and painstakingly researched.” (The research and writing took ten years.) And I think it’s a testament to her narrative skill that she presents the facts, lets them speak for themselves, without judgment, without stating her own opinion — leaving us raise questions and draw conclusions. “Skloot . . . twines together the strands of HeLa cells and Henrietta Lacks and of ‘Henrietta’s family . . . and their life-long struggle to make peace with the existence of those cells, and the science that made them possible.’ She does that so eloquently one can’t imagine the story being told any other way.” - Leigh Krietsch Boerner, Science, 26 Feb 2010

Even if she does not insert her own opinions and conclusions, the facts themselves stand as a critique of much of the science of the 1950s and 60s, the disregard for the rights of research participants, and the ethical issues that persist to this day/ The issues are tricky and tangled. And they involve poverty, racism, classism, and sexism, alongside the stunning advances in science (from cancer drugs and vaccines to gene mapping) made possible by Henrietta Lacks’s tumor cells.

The thorny ethical issues mainly concern those of informed consent, confidentiality, ownership of body tissue as well as personal information, and financial gain. We all like to think that we own our bodies, but we’ve all left bits behind in doctor’s offices and hospitals — whether blood, biopsy samples, moles removed, etc. —± which might be kept in tissue banks for years and, in some cases, can lead to valuable scientific technologies (that might be worth a lot of money). This is what happened to Henrietta Lacks’s tumor cells — and there was no effort to compensate her family, who were so poor they couldn’t afford adequate health care. (In most cases, our tissue samples are not worth anything individually, though they may contribute to an aggregate that’s worth a lot. Even so, their potential uses might not be clear for decades.)

This is an important contribution both to science and to the public understanding of science. And it’s a page-turner, too.

Updates

The ethical issues continue. In March, 2013, Henrietta Lacks’s genome was sequenced and publicized without her, or her descendants’ consent. This kicked off a new debate over the family’s privacy rights, and the paper was retracted . In August, 2013, the NIH and the Lacks family reached an agreement spelling out terms under which sequenced genomes of HeLa cells can be made available to scientists (who are asked to formally recognize the contribution of Henrietta Lacks and her family to science). Skloot was instrumental in initiating talks between NIH Director Francis Collins, researchers, and bioethicists.

Skloot set up The Henrietta Lacks Foundation, a 501c3 nonprofit charity, for the Lacks’s and other needy familiess. Among other things, the foundation provides scholarship funds and healthcare coverage for descendants of Henrietta Lacks. Skloot donates to the foundation from book and film proceeds and related speaking events. There are other fundraising activities and anyone can donate. The Foundation receives regular donations from the general reading public and individual scientists who feel that they have benefited from HeLa cells and want to do something in return for the family.

An HBO movie, starring Oprah Winfrey as Deborah Lacks, will air sometime in 2017. Henrietta’s sons are paid consultants on the film. They and other members of the family regularly appear as paid speakers at events related to the book and film.

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Jan 31, 2011 The Sassy Bookworm rated it it was amazing · review of another edition

Amazing read!

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Apr 24, 2011 Sera rated it it was amazing · review of another edition

Shelves: non-fiction, audio, library

A compelling read that is multi-faceted in nature. First, there is the story of Henrietta Lacks, a woman with cervical cancer who's cells are taken without her consent and then used in science, research and otherwise, from the 1950s until today. Second, there is the theme of ethics as it relates to science and how the state of patient rights has evolved (or not) since Henrietta's time. Lastly, the book takes a look at the family that Henrietta left behind and how their loss of their mother, wife A compelling read that is multi-faceted in nature. First, there is the story of Henrietta Lacks, a woman with cervical cancer who's cells are taken without her consent and then used in science, research and otherwise, from the 1950s until today. Second, there is the theme of ethics as it relates to science and how the state of patient rights has evolved (or not) since Henrietta's time. Lastly, the book takes a look at the family that Henrietta left behind and how their loss of their mother, wife, etc. impacted their lives, together with their living in the shadow of Henrietta's cells that most everyone has been able to make money on except for them.

Skloots does an excellent job of interweaving all of the aforementioned storylines by taking a chronological look at them in blocks of time. She also addresses the less prominent, but no less important theme of racism, in that many of the early test subjects involved African-Americans. Recall that the Tuskagee Experiment also occurred within the same decade as when Lack's tissue was taken. However, I believe that the saddest story of all in the book is the one of Elsie, Lack's eldest daughter, who ends up in a black mental health hospital. The topice of mental health during this time in history would have likely merited a book of its own. The sad thing is that all of these events happened not so long ago, and it wasn't until the late 1970s that reforms started to take place.

This book covers so much from an information perspective as to a personal one. It is truly a fascinating read, and one that I would recommend to anyone who seeks to understand a critical issue in our society that is still ongoing today. Frankly, I didn't truly appreciate the complexity of the issue of consent as it relates to the use of our cells, etc. or how the courts' decision to limit patient's rights led to the commercialization, and ultimately, monopolization of the results of the scientific research that could not have been conducted without those patients. This book will have me thinking for awhile. Definitely check it out.

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