Book Club - May E-Discussion

For the girls who could not make the in-person discussion, below are the discussion questions from the book club meeting. Let us know how you feel about all or even just a few of them - let's discuss the book!

Race

1)      The Immortal Life of Henrietta Lacks is the story of an African American woman and her family that touches on many big issues: bioethics, racism, poverty, science, faith, and more. What threads stand out to you and why?

2)      The author notes social inequities both explicitly and implicitly. What parts of Henrietta?s story might be different if she had been white? What might have been different if she had been middle or upper-middle class?

3)      What role did the deferential attitude toward doctors in the early 20th century play in the interaction between Henrietta and her family and Johns Hopkins? How has that attitude toward doctors changed over the decades? Do patients? socioeconomic differences affect the relationship today?

Cells and Science

4)      Henrietta Lacks died in 1951, but her cancer cells are still alive today. Do you think they carry some essence of Henrietta? How do you think you would perceive cells from someone close to you that grow in culture in a laboratory?

5)      A week after you finish reading the book, will you remember how cells divide? Do you now have a better understanding of cell biology? Either way, does it matter to you?

6)      The book mentions many medical breakthroughs using HeLa cells. Have your attitudes or ideas towards medical research changed in any way due to reading this book?

Privacy/Patient Consent

7)      The book is filled with stories of people used as research subjects, sometimes without their knowledge, sometimes with ill-informed consent, sometimes because of their inability to understand (patients with mental illness) or resist (prisoners). Were you aware of this history before reading the book? Do you think doctors and researchers of the past had a fundamentally different view of people than they do today?

8)      Today the definition of ?informed consent? remains murky. What did you learn about what it means or doesn?t mean? What does it mean to you?

9)      In the years since the uniqueness of Henrietta Lacks?s cells were discovered, others have been identified with cells that are valuable on the research market. In Chapter Five, Skloot details the history of John Moore, whose cells produced rare proteins, and Ted Slavin, whose cells produced valuable antibodies. All three cases are quite different in many ways, including how their doctors used the information. Should individuals be able to profit from their own cells? Should their doctors? With consent? Do you feel the courts should have ruled against them?

10)   Do you think Henrietta would have provided consent for her cells to be taken and used had she been asked?

11)   One of the issues the book addresses is patient privacy. Henrietta completely lost hers long before the book was published, but also didn?t get the fame her daughter, Deborah, thought she so richly deserved. Why does Deborah want fame for Henrietta?

12)   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?

Lacks Family

13)   How do you think Zakariyya reacted to the completed book and to the way the family was depicted? How do you think Deborah would have reacted?

14)    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?

15)   Was it right for the researchers to contact the family later for blood/DNA samples, to think the family understood what they were doing and why were they doing it?

16)   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?

17)   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?

General Questions

18)   13. Did you like the author?s involvement in the book? Too intrusive?

19)   14. How realistic was the characterization, especially of Deborah and Zakariyya? Would you want to meet any of them? Did you like them? Who was your favorite character?

20)   Did you like the book? Why or why not?