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Book Club Kits: The Immortal Life of Henrietta Lacks

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Book Summary

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.

Soon to be made into an HBO movie by Oprah Winfrey and Alan Ball, this New York Times bestseller takes readers on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers filled with HeLa cells, from Henrietta’s small, dying hometown of Clover, Virginia, to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells. The Immortal Life of Henrietta Lacks 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. It’s a story 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’re made of.

Read an excerpt from the book.

Discussion Questions

  • The passage in which the initial fated cells were removed from Henrietta Lacks’s body reads as follows (see page 33)

    “With Henrietta unconscious on the operating table in the center of the room, her feet in stirrups, the surgeon on duty, Dr. Lawrence Wharton, Jr., sat on a stool between her legs. He peered inside Henrietta, dilated her cervix, and prepared to treat her tumor. But first – though no one had told Henrietta that TeLinde was collecting samples or asked if she wanted to be a donor – Wharton picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta’s cervix: one from her tumor, and one from the healthy cervical tissue nearby. Then he placed the samples in a glass dish.”

    Bearing in mind that those two tissue samples removed from Henrietta were not removed in an attempt to treat her cancer, but rather purely for purposes of research, was it wrong for the doctor to remove the sample tissue in the first place? Was it wrong for Dr. Gey to collect those samples for the purpose of trying to grow them in controlled conditions? Does the end – i.e., the immeasurable benefit to humankind resulting from those tissue samples – justify the means – i.e., removing tissue from a person without their consent or knowledge?

  • Discuss the process of taking these cancerous cells and growing them in the “auger” or medium that allowed them to continue to multiply. Was it her human cell line?

    (Note: As genetic knowledge has increased HeLa is: not really a human cell line at all because it involves a genetic fusion of a papilloma virus and Henrietta’s cervical cells. The hybrid has its own genome and attempts have been made to have the cell line recognized as a species in its own right. Of course this cell line also contaminated other cell lines in labs around the world. In a Feb. 2010 paper, HeLa was found as a contaminant of 106 out of 306 cell lines tested.

  • Did you get the impression that Henrietta was treated any differently than a rich, white woman would have been (assuming the hospital was also collecting cell samples)?

  • How do you feel about knowing that you still do not have total control over your body once you go to see a doctor? If you discovered that tissue routinely removed from your body at some point in the past went on to significantly benefit science and research, would you feel that you should somehow be compensated? What do you think is more important – a person’s personal rights over their own tissue, or contributing to science and research for the benefit of all humankind?

  • Was it a good thing for the members of the Lacks family that the author wrote this book? Was this attempt different from previous attempts to write about the Lacks family and Henrietta in particular?

  • How much impact on the Lacks family members’ long term lives did Henrietta’s early demise have? Do you think that her children’s lives would have turned out significantly different had Henrietta not died so young?

  • Was it hubris, lack of “patient experience,” or frankly, sheer stupidity on the part of the researchers who contacted the family later for blood/DNA samples, to think the family understood what they were doing and why were they doing it?

  • Why has the discovery of the existence of HeLa cells been so difficult for the Lacks family? Discuss the family’s ignorance and their lack of medical knowledge. Why did it take until 2001, 50 years after Henrietta’s death, for a researcher at John Hopkins to show Deborah the cells and tell her these weren’t Henrietta’s regular cells, just trillions of cancerously transformed cells, and that there was never going to be a clone of her mother?

  • Do you think the family is owed money for the sale of the HeLa cells? Do you agree with their feeling that they should be compensated?

  • Do you think that the attitude among some of the Lacks family members that they should be monetarily compensated for Henrietta’s contribution to science is born out of their poverty and/or oppression based on their race? Do you think if the family were financially comfortable, white, and not the subjects of regular discrimination that their feelings of being owed compensation might be different?

  • When the doctor of the patient, Mr. Moore, lied to him about the financial value of his cells, do you think the doctor behaved unethically, and the court should have ruled against him?

  • What did the author hope to accomplish by writing this book? Did she accomplish what she set out to do? To what do you attribute the family’s change of heart regarding the HeLa cells?

  • Was the presence of the author in the book disruptive or appropriate?

  • How realistic was the characterization, especially of Deborah and Zakariyya? Would you want to meet any of them? Did you like them?

  • What life lessons can be learned from this account?

  • Do you think the bad things that happened to the family were based on their race, particularly in regards to Elsie (Henrietta’s daughter who was institutionalized) and Henrietta’s hospital care? Was it forgivable based on the time period or should amends be made?

  • How does the setting figure into the book? Is the setting a character? Does it come to life? Did you feel you were experiencing the time and place in which the book was set? How did you feel at the end when Clover was gone? Do you think this was an allegory for Henrietta’s family’s travails?

  • How realistic is it for Courtney Speed, the grocery store owner in Turner Station, to start a museum?

  • Discuss the medical breakthroughs from HeLa cells. Have your attitudes or ideas towards medical research changed in any way due to reading this book?

  • Ownership of genetic material is still a vexed issue. Many human genes have been patented and a battle is currently being fought through the U.S. courts between doctors and a biotech company owning the patents for genes used in breast-cancer research screening. What are your thoughts about research and patents in this now “profit making” industry?

Book Trailer