Discussion: Henrietta Lacks

I hope you’ve enjoyed reading The Immortal Life of Henrietta Lacks (and appreciated having some extra time – I sure did!). It was certainly a thought-provoking story and I came away feeling both inspired and betrayed by science.

Here are some discussion questions to get you going. Feel free to respond to any or all (or add your own questions) in the comments below!

  1. Henrietta signed a consent form before her operation: “I hereby give consent to the staff of The Johns Hopkins Hospital to perform any operative procedures and under any anaesthetic either local or general that they may deem necessary in the proper surgical care and treatment of: ________” (page 37). Do you believe that her signing this consent gave TeLinde and Gey the right to obtain a sample of her cervix for research (without her knowledge)? Why or why not? Do you always thoroughly read consent forms before you sign them?
  2. If you discovered that tissue was removed from your body for research purposes, would you feel entitled to compensation? What if the research led to a significant scientific breakthrough? What do you think is more important – a person’s control over their own tissue and body parts, or contributing to the “greater good” with or without your permission? Would it make a difference if you were harmed by the removal of your tissue?
  3. How has the relationship between patients and doctors has changed since the 1950s? Would contemporary patient-provider dynamics (and laws) affecta doctors’ abilities to utilize your tissues without your knowledge/consent?
  4. There are many examples of people being used as research subjects, without their knowledge or consent or because they are coerced or unable to understand. To what extent were you aware of this history before you read the book? Does this change in any way your perception about the scientific breakthroughs of the 20th century?
  5. Do you think Henrietta would have been treated differently had she been a rich white woman? Do you think her family would have been treated differently in the aftermath of discovering the truth about her cells had they been of a different race or socioeconomic class?
  6. Race and racism are important themes in the book, but the author was a white person telling the Lacks’ family story. How do you feel about a white woman putting together the narrative?
  7. What do you think about some Lacks family members wishing to be compensated for Henrietta’s contribution to research? Do you think they would have felt as strongly had they been of a different race or socioeconomic class?
  8. What did you learn from reading The Immortal Life? What surprised you the most? What disturbed you the most?

Note: Page numbers are based on the edition that I read.

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