Nuclei, microfilaments and membrane particles in HeLa cervical cancer cells.
biomedical ethics

The DO Book Club, August 2020: The Immortal Life of Henrietta Lacks

Henrietta Lacks’ cells sparked a medical science revolution and a multi-million dollar industry, but her family was kept out of the loop.

Welcome back to The DO Book Club! For August, I read The Immortal Life of Henrietta Lacks by Rebecca Skloot. If you’ve read this one, please share your thoughts in the comments below. And if you’d like to write a book review for a future month, please email Andy Brown at abrown@osteopathic.org.

Plot summary

In 1951, a 31-year-old African-American woman named Henrietta Lacks died of cervical cancer at The Johns Hopkins Hospital in Baltimore. She received no obituary and was buried in an unmarked grave in a small cemetery in Virginia. Prior to her death, during a tumor removal operation, a doctor extracted two pieces of tissue from her cervix (one cancerous and one healthy) for research purposes, without her consent.

This was then and is now a fairly common, and legal practice, though debates over the ethics of it continue to this day. In 2017, the Department of Health and Human Services considered requiring federally funded scientists to get patient consent before using cells, tissue or DNA for research, but ultimately decided against it.

But back in 1951, Henrietta’s cancerous cells—unlike all previous samples, including her healthy cells—didn’t die once they were put in culture. In fact, they grew with “mythological intensity” (p. 40) and could be forced to divide with much less effort than what was required for other human cells.

Having an unlimited supply of immortal human cells opened up avenues for research that had previously never been conceivable. A cell biologist at Hopkins started sending “HeLa cells” to labs around the world, kicking off a medical science revolution that included the first measured impact of space travel on human cells and the discovery that we have 46 chromosomes and not 48. HeLa cells are still “one of the most commonly used cell lines in laboratories around the world” (p. 312).

All the while, Henrietta’s family lived in abject poverty and was only informed of her impact on science thanks to one relative’s fortuitous conversation with a researcher who had worked with the cells. This book tells the concurrent histories of those cells and the Lacks family.

Interesting tidbits for DOs

Just months after Henrietta died in 1951, the world’s biggest polio epidemic broke out. Schools closed and the public clamored for a vaccine. The same Hopkins biologist who had discovered the immortal quality of HeLa cells, George Gey, quickly realized he was sitting on a “gold mine” (p. 94).

Gey infected the cells with poliovirus and found them to be more susceptible to it than any other cultured cells had been, making them the perfect subjects for (then) unprecedentedly urgent and mass-produced vaccine testing. Shortly after this revelation, the National Foundation for Infantile Paralysis (now March of Dimes) launched a HeLa cell production factory at the Tuskegee Institute in Alabama, which led to not only the development of a polio vaccine, but also a booming cell production industry that helped launch the field of virology.

But while there have been several tons’ worth of HeLa cells produced since 1951, the Lacks family has yet to see any part of the profits, and many are unable to afford health insurance. The book provides ample details on the rocky relationship between the Lacks family and Hopkins, but Henrietta’s cousin Cootie summed it up well when she said “[Henrietta’s] cells lived longer than her memory” (p. 118).

Notable quotes

If you’re like me, you’ll get 200 pages in and wonder, “how were her cells so different?” Skloot explains on page 217 that nobody knew the answer until the early 1990s:

“… a scientist at Yale used HeLa to discover that human cancer cells contain an enzyme called telomerase that rebuilds their telomeres … indefinitely. This explained the mechanics of HeLa’s immortality: telomerase constantly rewound the ticking clock at the end of Henrietta’s chromosomes.”

Again though, there was a disconnect between these discoveries and the Lacks family’s involvement and understanding for many years. When Henrietta’s late daughter Deborah, who was not highly educated, started providing blood samples for a Hopkins lab upon request in the 1970s, the doctor in charge offered no real explanations for what her blood was being used for. He instead handed her a textbook on medical genetics that made a brief mention of Henrietta.

“Reading magazines took Deborah a long time because she had to stop often to look up words in her dictionary. Now she sat in the clinic gripping [the] book, not even trying to read the words” (p. 188).

Takeaways

This is a complicated story, which I think is probably evident in this review. It’s a story of how tissue samples harmlessly collected during surgery sparked a boom in scientific knowledge, but it’s also a story of a human being and her family, who was never in the loop on any of it and feels left out to this day. The ethical quandaries woven through this story are not easy to sort out, as Skloot admits, and by the end, you are likely to have a lot on your mind.

All told, it is an important historical read for anyone involved in health care, and Skloot did a great job of explaining the fascinating timeline of Henrietta’s immortal life, which began 100 years ago this month in 1920.

September’s book

For September, The DO Book Club will be reading Fallible: A memoir of a young physician’s struggle with mental illness by Kyle Bradford Jones, MD. We encourage all who are interested to read along! If you are unable to get out to a local library or bookstore due to COVID-19, we recommend checking out eBook options for rent or purchase.

As a reminder, if you read The Immortal Life of Henrietta Lacks or any previous Book Club selection and want your reflections to be shared in future posts, or want to write your own book review for a future month, please leave a comment below or email abrown@osteopathic.org.

Happy reading!

Related reading:

The DO Book Club, July 2020: The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma

The DO Book Club, June 2020: The Ghost Map: The Story of London’s Most Terrifying Epidemic

3 comments

  1. I teach an Introduction to Clinical Medicine course in a medical school and this book was a summer reading assignment. I was grateful to discover that many of the students in the class felt the same way I did – they really disliked this book. I’ve summarized many of the reasons why the students and I developed such strongly negative opinions of “The Immortal Life of Henrietta Lacks” on Goodreads and Amazon Book Reviews, since I’m very limited in the comments I can leave here.

    The author has created a mythology. By referring to Henrietta somehow being “alive” is falacious. The cells are not Henrietta – in fact they are the opposite of Henrietta. The cells are anti-Henrietta and are what actually killed her. Do you cry and worry over the hair that’s left on the floor of a barbershop after a haircut? How about your nail clippings? What about baby teeth or a wart that is burned off? What is,the difference between any of these things and Henrietta’s cells? The family were uneducated and superstitious and to continuously refer to the cells and somehow “being” Henrietta was a confusing and cruel fantasy.

    Why did the author use the convention to colloquialize the speech of the minority characters (the Lacks and Susan Hsu the Chinese lab assistant) but not any of the other foreign characters? This is probably the most offensive thing about this book. It’s condescending and probably racist.

    If you want to know the other 7 or 8 reasons why this is a terrible book, go to Goodreads.

    1. Dr. O’Malley,

      Thank you for this thoughtful comment. You raise many important points about the book. We hope to see your thoughts on future book selections as we continue the series each month.

  2. It is important to consider the exploitation of Henrietta Lacks as just a small piece of a bigger history of immorality fueled by systemic racism in our healthcare system. Skloot, stated the fact plainly as the “dark history of experimentation on African-Americans.”

    With the recent declaration of racism as a public health crisis, understanding the origins of medical mistrust and history of inequities in healthcare is paramount to providers and students alike. The disproportionate outcomes of COVID-19 with African-Americans is just another chapter in this century long tale. The story of Henrietta Lacks is an essential bridge when looking forward and finding solutions to current day health disparities.

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