|cell reproduction; tissue harvesting
|number of cells sold, reproduced, and remaining in storage
|business of tissue harvesting and economic impact; Intellectual Property Laws
|impact on the Lacks family and decendants
|storytelling, fact checking, linguistics
|Analysis of machines George Gey invented to grow cells; Current Tissue Culture Technology; Regenerative medicine
|treatment classes and races in 1950s & 1960s; Impact science research of HBCUs in 1950s and 1960s; Nuremberg Code; Tuskegee Syphillis Study; Nuremberg Trials
|treatment of oldest child of Henrietta Lacks and children after her death
Standards for Ethical Research; Johns Hopkins Hospital staff
Source: Salisbury University
1. Start by unraveling the complicated history of Henrietta Lacks's tissue cells. Who did what with the cells, when, where and for what purpose? Who benefited, scientifically, medically, and monetarily?
2. 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?
3. What are the specific issues raised in the book—legally and ethically? Talk about the 1980s John Moore case: the appeal court decision and its reversal by the California Supreme Court.
4. Follow-up to Question #2: Should patient consent be required to store and distribute their tissue for research? Should doctors disclose their financial interests? Would this make any difference in achieving fairness? Or is this not a matter of fairness or an ethical issue to begin with?
5. What are the legal ramifications regarding payment for tissue samples? Consider the the RAND corporation estimation that 304 million tissue samples, from 178 million are people, are held by labs.
6. What are the spiritual and religious issues surrounding the living tissue of people who have died? How do Henrietta's descendants deal with her continued "presence" in the world...and even the cosmos (in space)?
7. Were you bothered when researcher Robert Stevenson tells author Skloot that "scientists don’t like to think of HeLa cells as being little bits of Henrietta because it’s much easier to do science when you dissociate your materials from the people they come from"? Is that an ugly outfall of scientific research...or is it normal, perhaps necessary, for a scientist to distance him/herself? If "yes" to the last part of that question, what about research on animals...especially for research on cosmetics?
8. What do you think of the incident in which Henrietta's children "see" their mother in the Johns Hopkins lab? How would you have felt? Would you have sensed a spiritual connection to the life that once created those cells...or is the idea of cells simply too remote to relate to?
9. Author Rebecca Skloot is a veteran science writer. Did you find it enjoyable to follow her through the ins-and-outs of the laboratory and scientific research? Or was this a little too "petri-dishish" for you?
10. Skloot had to make a lot of choices about how she recounted Henrietta’s story and how she structured the book. What do we know about her process from the foreword and endnotes? How does her narrative reconstruction of Henrietta’s life impact the story? How do you feel about the reconstruction?
11. 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?
12. 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?
13. Was the presence of the author in the book disruptive or appropriate?
14. What did you learn from reading The Immortal Life? What surprised you the most? What disturbed you the most?
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.
2. 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?
3. 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?
4. 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?
5. Consider both the taking of the cell sample without her knowledge, let alone consent... and the questions it is raising 60 years later when society is more open about racial injustice?