Informed consent'' remains murky


1.Race and racism are woven throughout the book, both in the story presented and in the process of the research for the book. Skloot was yet another white person asking the Lacks family about Henrietta. How do you feel about a white woman creating the narrative of this story? How did her race help or hinder Skloot in the writing and researching of the book?

2. 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?

3. 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?

4. 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 think Henrietta would have provided consent for her cells to be taken and used had she been asked?

5. Making health care affordable to all Americans has been a recent political focus. What does the story of Henrietta Lacks and her family add to this discussion? 

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