November’s choice is “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. Visit the author’s web site to read an excerpt.
Science journalist Skloot makes a remarkable debut with this multilayered story about faith, science, journalism, and grace. It is also a tale of medical wonders and medical arrogance, racism, poverty and the bond that grows, sometimes painfully, between two very different women—Skloot and Deborah Lacks—sharing an obsession to learn about Deborah’s mother, Henrietta, and her magical, immortal cells. Henrietta Lacks was a 31-year-old black mother of five in Baltimore when she died of cervical cancer in 1951. Without her knowledge, doctors treating her at Johns Hopkins took tissue samples from her cervix for research. They spawned the first viable, indeed miraculously productive, cell line—known as HeLa. These cells have aided in medical discoveries from the polio vaccine to AIDS treatments. What Skloot so poignantly portrays is the devastating impact Henrietta’s death and the eventual importance of her cells had on her husband and children. Skloot’s portraits of Deborah, her father and brothers are so vibrant and immediate they recall Adrian Nicole LeBlanc’s Random Family. Writing in plain, clear prose, Skloot avoids melodrama and makes no judgments. Letting people and events speak for themselves, Skloot tells a rich, resonant tale of modern science, the wonders it can perform and how easily it can exploit society’s most vulnerable people. (Publisher’s Weekly)
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. 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.
3. 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?
4. 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.
5. 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)?
6. 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 resarch…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?
7. 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?
8. Is race an issue in this story? Would things have been different had Henrietta been a middle class white woman rather than a poor African American woman? 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?
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. What did you learn from reading The Immortal Life? What surprised you the most? What disturbed you the most?