Immortal Life of Henrietta Lacks by Rebecca Skloot

There is a great BOOK GROUP DISCUSSION GUIDE here

There is also a TEACHER'S GUIDE here.  This is so darn cool!!!! It has questions by CHAPTER and by SUBJECT and by LITERARY TECHNIQUES.

I particularly liked these questions:

1. When Henrietta’s story first appeared in the mainstream media in 1976, many viewed it as one of race and racism. Evaluate whether or not you think this is an appropriate way to interpret the story. How do you think public interpretation might have been different if the story had been published at the time of Henrietta’s death in 1951? How is it being interpreted now? Analyze the cultural and historic events that have influenced, or would influence, these interpretations.

2. Consider Deborah’s comment on page 276: “Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.” How does cultural perspective influence the way history is recorded, taught, and studied? Why is it important to approach history from an objective point of view? Why is this approach sometimes difficult?

3. Although a right to privacy is not explicitly mentioned in the Constitution, the Supreme Court has established that it is inherently protected by the Constitution. Explain the numerous ways that the Lacks family’s right to privacy was violated. Discuss the importance of the right to privacy. How has this right evolved over the course of American history? How is it being challenged by emergent technologies? How have groups of people such as African Americans, women, children, and most recently, immigrants, fought for legislation protecting their right to privacy? Cite specific court cases and/or current events.

ONLINE RESOURCES
Author Web site: http://rebeccaskloot.com/

Lacks family Web site: http://www.lacksfamily.com/

Radio lab segment on the story of Henrietta Lacks and her children, featuring audio footage of Deborah Lacks talking about her mother’s cells, and actual recordings of key scenes from the book: http://www.wnyc.org/shows/radiolab/episodes/2010/05/07/segments/150681

Fresh Air’s Terry Gross interviews the author: http://www.npr.org/templates/story/story.php?storyId=123232331

CBS Sunday Morning piece featuring interviews with the author, members of the Lacks family, and a representative from Johns Hopkins: http://www.cbsnews.com/video/watch/?id=6304949n&tag=related;photovideo

Tavis Smiley interviews the author: http://www.pbs.org/kcet/tavissmiley/archive/201005/20100514_skloot.html

“Are We Alone?” public radio segment focusing on the science of HeLa cells: http://radio.seti.org/episodes/Cell_Cell_

Author appearance on The Colbert Report: http://www.colbertnation.com/the-colbert-report-videos/267542/march-16-2010/rebecca-skloot

Slate article about the Law & Order episode based on the book: http://www.slate.com/id/2257189

The author combined her personal story and research with that of Henrietta Lacks and her family to help us understand pieces of scientific history, specifically medical research. There were many topics and themes that came up in discussion. Here is a quick recap of some that I remember!

Bioethics

– Today the definition of “informed consent” is unclear.   Some of us have signed waivers about “releasing body parts/cells” before surgery and others of us can’t remember signing any special paperwork. 

– We talked about how once a body part (or placenta, mole, or other cell) leaves your body, it is considered “trash,” but that doesn’t mean it is incinerated.  Some cells go into research or storage. 

– We might not like what is being researched, but can only designate BEFORE the cells are taken.

– Some of the research of related to ancestry, gender, for prolife (when does life begin?) and we wondered whether or not we wanted to have our cells be used “against us” or for a (political) cause we didn’t support.

Racism

– Skloot, the author, was yet another white person asking the Lacks family about Henrietta. 

– Henrietta (and her institutionalized sister) was treated more badly because she was African American.  She didn’t have proper treatment for her cancer and wasn’t even treated for over a year after she first noticed a problem. This could have been because she was a women and/or because of her race.

Poverty

– 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). 

–  Most of us knew this history existed, but we hadn’t thought about all the ramifications.

Science

– Some of us now have a better understanding of cell biology.

– We have thought about donating body/cell parts to further research, and also about the laws changing to require consent.

– Henrietta never provided consent for her cells to be taken and used – although this was a little confusing in the book, did her husband give consent after the fact?

 

Writing Style

– It was interesting to hear about Deborah’s abuse by Galen in Chapter 15. 

– Deborah’s story made the whole story more interesting.