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The Immortal Life of Henrietta Lacks by Rebecca Skloot

7/4/2019

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I read this book as part of a now-defunct book club. Book clubs never last long when I join, I might be bad luck. 

To be fair...I was one of two people who had actually read the book so perhaps that was some of the issue. 
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Title: The Immortal Life of Henrietta Lacks
Author: Rebecca Skloot
Page Number: 381- 400
Genre: Biography, Memoir, Science, Nonfiction
Publisher: Broadway Books, an imprint of Crown Publishing Book which itself is a division of Penguin Random House. 
Year: 2010
Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.

Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.

Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia — a land of wooden slave quarters, faith healings, and voodoo — to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.

Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family — past and present — is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.

Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance?
​
Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

Don't get me started on how Penguin Random House missed the opportunity of a lifetime by not combining into Random Penguin (House). I don't care that it's silly and doesn't make any sense via combination of two companies. It's the best.

I'll actually probably mention this again. 

Before I say anything about the book, the author/publisher has a website in which you can read an excerpt, download a reading guide or a teacher's guide. You can also purchase the book (with the movie tie-in title or the original featured above), audio book or eBook. 
This book is about the first immortal cells, the woman that unknowingly produced them, her family, the science they produced, and the practice (and law structure) of harvesting cells. That might not sound utterly fascinating, but it truly is. 

The main character is a woman named Henrietta Lacks. Lacks went in for cancer treatment at a segregated hospital in 1951. While she was at the hospital, cells were harvested from a biopsy. Lacks neither knew nor was consulted about the cell culture. Her cells became some of the first cells that could live on and reproduce outside of the body, a process called biological immortality. I'm hoping this is explained correctly. The book goes into more detail but I'm not a scientist and I was trying to simplify the context. Lacks passed away in 1951 at the age of 31. She was a mother to five children and a tobacco farmer. The biography of Lacks in this book is important because it gives a voice to a woman who is actually paramount in the evolution of biological medicine. This is the biography part of the book. 

The memoir part comes from the author's contemporaneous telling of how she interviewed the Lacks' family and how she wrote the book. Skloot is a science writer by trade and this was her first book. She interviewed members of the family, who were never paid for Henrietta's cells or their future "earnings", several times. Skloot also dove into medical research archives. This part was fascinating because Skloot explains the ethics (and rules/non-rules) of scientific research, the trust of confidentiality in personal medical histories (can vary) and other people who had their cells harvested without permission.


The interaction with Lack's daughter, Deborah, is by far the most crucial. I think she gives a voice to the somewhat sterile conversation about cell harvesting and Lack's biomedical immortality. Her life, grief and struggle are based on her mother's death and it really resonated with me. While Skloots is a character in the book, Deborah breaths life. She is a truly sympathetic character. If you see the HBO movie (I haven't yet), Deborah is portrayed by Oprah. 


To me, this was all new. In a world where genetic testing and medical history can be used against you (e.g. employers not hiring or firing a person based on probability of genetic code) it's a bit scary that a person's DNA can be taken from them, used scientifically and then become a known, searchable identifier. 

Lacks' descendants have often been at the forefront in fighting for privacy in biological testing and research. They were instrumental in getting Johns Hopkins (the hospital that treated Lacks and took her cells) to issue a new bioethical standard and to place two family members on a board that would decide the grants of Lack's cells to any group that requests them through Johns Hopkins and the NIH. This began in 2013, 62 years [≈ average human life expectancy at birth, 2011 estimate] [≈ average human life expectancy at birth, 2011 estimate] after the cells were taken.

The science part of the book fascinated me the most. Not that Henrietta wasn't interesting, nor the creation of the book but the science was amazing. Henrietta's cells, called HeLa from the first two letters of her first and last name, were the first immortal human cells to continue living and multiplying in the lab environment. The man that first developed the cells was named Dr. George Guy, who followed the normal protocol of cell curation of the day (permission wasn't needed nor asked), he was a researcher at Johns Hopkins. Johns Hopkins never sold the cells, instead they gave them away for free to medical researchers, which probably also helped cure/help many diseases but at the same time created such a quagmire for the Lacks' family. 

I don't want to give too much away, but the amazing part comes from what HeLa cells have done:
  • duplicated the polio virus and helped to create the vaccine in mass-production
  • been sent to space
  • were cloned
  • been used to research AIDS, cancer and other diseases
  • been sequenced genomically
  • helped to develop in vitro fertilization
  • the effect of radiation and toxins on humans
  • used to study nanotechnology


An undercurrent in this book is also the everyday racism that was in science and medicine in the 1950s. For instance, Johns Hopkins does take black patients, but in a segregated section. Race is undercurrent and I absolutely took away how affected almost everyone in the book. ​

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RadioLab did a segment on Henrietta Lacks, HeLa cells and an interview with Rebecca Skloot. Also included are interviews or audio bits with with the doctor who first treated her, Mary Kubicek (she's great in this), Sadie (cousin), Gladys (sister), Dr. George Guy, Deborah Lacks, and Gary (cousin). I really encourage listening to this, it's fantastic. 
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Other:
  • The New York Times op-ed, written by Rebecca Skloot, adds a postscript on the legal battle and ethical quagmire of cellular publishing. Skloot bemoans the sequencing of the HeLa cells by a group of scientists (I believe the European Molecular Biology Laboratory), who published the entirety without seeking permission from anyone in the Lacks' family. The scientists took it down once the Lacks family asked. Skloot explains why regulations and ethics in science law don't match up with current scientific breakthroughs. It's titled The Immortal Life of Henrietta Lacks, the Sequel and was written in 2013.
  • Looking further into laws passed about genetic information, I found a slightly disturbing (re: insurance) article from the Atlantic titled, The Loopholes in the Law Prohibiting Genetic Discrimination. It's a good read. 
  • Henrietta Lack's Wikipedia article
  • The Smithsonian did an interview with Rebecca Skloot, titled Cracking the Code of the Human Genome: Henrietta Lacks’ ‘Immortal’ Cells. 
  • New York Times, Book Review: Eternal Life
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