The Immortal Life of Henrietta Lacks by Rebecca Skloot.
Broadway Books, Crown Publishing Group, Penguin Random House, New York, 2010.
My edition 2011, some portions published as early as 2000.
Nonfiction, 381 pages including notes, index, and reading group guide.
Lexile: 1140L .
AR Level: 8.0 (worth 18.0 points) .
Henrietta Lacks had an usual type of cancer. Cells from this cancer were able to become the first immortal cell line and have been invaluable to many scientific discoveries and advancements in the past century. But Henrietta was also a working-class black woman whose family was not informed of the existence of this cell line, and who died misdiagnosed. This book manages to tell three stories: the story of Henrietta and the Lacks family, the story of her famous and scientifically important cells, and the story of the reporter’s own experiences interacting with the family.
The movie tie-in cover tricked me. I needed to grab a Target pick quickly, so I grabbed this book without realizing it was one I had flagged as do not purchase/obtain from friend or library. As you can tell, reading this book was something I was conflicted about, and after finishing it, I remain deeply conflicted and uncertain if I can recommend it (though I know a great deal more about the HeLa controversies than I did before reading this).
The book is divided into three major sections: Life, Death, and Immortality. Within each section, the chapters bounce about chronologically, from Henrietta’s lifetime to the present day. Each chapter has a timeline header with an arrow and notation explaining when it takes place. Despite the jumps, the reader can tell when each chapter is occurring and there is a clear narrative flow.
Honestly, I wish this book wasn’t well written, because then I could just write a wholly negative review and be done. Instead, I really pushed myself to identify the specific points that troubled me the most. While reading, my thoughts were constantly drawn back to the sensitive and nuanced portrayal of the women in Hidden Figures. That #ownvoices story didn’t leave negative aspects out, but gave a balanced and thoughtful perspective, mindful of the larger cultural forces at work in the events of the book.
Where this book really made me feel iffy was the interactions Skloot had with Henrietta’s daughter, Deborah. She certainly was a tenacious and dedicated reporter, but I also felt like there were portions of Deborah’s story that would have been better left out, especially since they were not balanced. There is one point, towards the end, where (Spoilers) the reader is led to believe that Deborah is mentally ill, but it turns out that she is having significant medical issues which are affecting her actions and thoughts. (end of spoilers) I was so troubled by the portrayal of this scene.
There are significant swears in this book as well as a description of an attempted rape of a child. Throughout the book there are descriptions of medical procedures, illnesses, and unethical research. For that reason, I would not generally put this in a middle school library unless a Young Reader’s Edition is later released.
In the end, this book has a similar problem to Claudette Colvin: Twice Towards Justice. While I felt that book solved the issue appropriately by, wherever possible, drawing directly from taped interviews and conversations with Colvin, I’m not so sure that this book falls on the right side of the line. Skloot is involved in black culture mainly because of her involvement with this family and book, and while she is clearly an excellent writer and a fine researcher, that doesn’t exempt her book from being problematic or getting called out on these issues.
Part of my conflict about this book is that Skloot did something valuable. She saved a great deal of information about Henrietta Lacks from the oral history of her family, where it could have been lost or altered after the deaths of those who personally knew her. She brought this issue to the attention of many new people, specifically many non-scientific laypeople, and she writes clearly and concisely about what occurred and the medical and ethical dilemmas of using HeLa cells.
But she seems completely unaware that there may be cultural and ethical issues with her, a white woman, writing about a black family. Particularly I was troubled by the inclusion of detailed and personal information about the Lacks children’s childhoods. Just as when their blood was drawn, Skloot may have thought she was getting informed consent, but whether she actually did is unclear. There is one portion of the book where a family member specifically asks for information not to be used, although that is included in the book.
Skloot does work to set the HeLa cells and Henrietta’s own life within a larger context. But the inclusion of her daughter as a major character, and Skloot’s own significant presence in the book, led me to feel like she was adding drama to a narrative that didn’t need any extra dramatization.
Two benefits of reading this book are that I’m more aware of cell ethics and uses, and I’ve bumped Bad Blood, a book about the Tuskegee Syphilis experiment, up to the top of my TBR. I want to learn more about medical care for PoC, good and bad.
If anyone has a link to any #ownvoices reviews of this book, I’d love to read them. While I enjoyed reading this, I’m also troubled by it, and thus cannot recommend it, but will ponder further.
A few articles for further reading:
For the Henrietta Lacks Family, It’s a Matter of Who Gets to Tell Their Story
Henrietta Lacks’s family wants compensation for her cells
Returning the Blessings of an Immortal Life
On eve of an Oprah movie about Henrietta Lacks, an ugly feud consumes the family
New Claims Prove the Henrietta Lacks Controversy Is Far From Over