The Immortal Life of Henrietta Lacks
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This book had been on my want to read list for a while. I think I probably read a review about it somewhere that sparked my interest. Several months ago I picked up a copy at a library sale so that moved the book up my reading list. It is an enjoyable and enlightening book on its own - but perhaps even better as a discussion book. The story is full of moral and ethical points and quandaries that you'll want to discuss it with someone. I had a hard time waiting the full month to discuss it with my book club and on several occasions throughout the month I gave my husband some back story and then picked his brain for thoughts and reactions.
On a scale of 1 - 5
Sex - It's a book about a lady who had cervical cancer - sex and sexual organs are going to be mentioned. But it's not a romance novel. The references are done either clinically through medical eyes or simply through Henrietta's eyes such as when her man wants to get with her (ref. p. 14). Henrietta and her husband were actually cousins. Bobette warns Deborah against having sex with her cousins.
Religion - The author admittedly relies more on science than faith in her daily life so the book is not meant to be any sort of religious witness. Yet Henrietta seemed to be a very spiritual woman. "No one in Henrietta's family ever saw a Hopkins doctor without visiting the Jesus statue, laying flowers at his feet, saying a prayer." (p. 14) Then we read, "But that day Henrietta didn't stop." (p. 14) implying a superstitious aspect of religion. There are occassional "Lord"s peppered through dialogue for emphasis. Deborah often blames happenings on the spirit of her mother. And Deborah's cousin was a preacher. Towards the end of the book there is a rather intense scene when he seems to be overtaken by the Spirit of the Lord and spends several minutes praying fervently outloud for Deborah, in front of Ms. Skloot. He then leads Rebecca in reading several Bible passages. I almost thought she was going to be converted but she wasn't.
Gruesome - There are some stomach turning passages about how inmates and others were used for scientific studies without their knowledge. Similar revelations were made in Unbroken, our previous book. So having a double dose of it made it that much more convincing and real and therefore slightly more gruesome. Oddly one of the research studies involved tularemia which was mentioned in The Unfinished Work of Elizabeth D.
Suspense - You know from the start that Henrietta is going to die from her cancer so there is no suspense there. But there are a few plot lines that make you want to keep reading to see where something is going or how it winds up.
Morality - This book raises several issues for debate. But there are no answers provided so the morality lies in the mid-range. The book is not preachy or persuasive but does open a lot of moral cans of worms.
Chapter 27 was an a-ha chapter for me to see the connection between Henrietta's cervical cancer and HPV. Today we hear so much about the vaccine!
I liked that Ms. Skloot didn't tell us the proper pronunciation of Zakariyya until Chapter 30. Most people probably mispronounce it, unless they hear it on the audio CD first. Even the author mispronounced it until she finally went to meet him (in Chapter 30) and Deborah cautioned her not to say it wrong as she had been (and so had I). So instead of feeling stupid or frustrated i felt like I was on par with the author.
Aside from all the science and HeLa history, one of the biggest learnings I gained from reading this book was how much I take my own education and just plain common sense for granted. In a different light some of the misunderstandings of Henrietta's children regarding her cells as presented in this book would be seen as making fun of them but somehow Ms. Skloot managed to make me want to reach through the pages and hug them instead of being annoyed by or laughing at their ignorance.
After reading Unbroken and now this book, I might even get paranoid about unauthorized experimentation.
The book was great about wrapping up what happened to the numerous people who were a part of the story. But it left me hanging on a town. Henrietta spent much of her youth in Clover, VA and one day Ms. Skloot went to the town for research and it was just gone. She had been there before but on this trip the town had disappeared. I thought perhaps a tornado wiped it out or something but it appears that the town just shut down. According to Wikipedia it became unincorporated in 1998 but still had 438 people according to the 2010 census. I found current listings for one restaurant but no hotels, hair salons or schools list Clover as their address.
I can overlook that though because Ms. Skloot definitely did not leave the Lacks family hanging. I think it is wonderful that she created the Henrietta Lacks Foundation and donates some of the book proceeds to it.
Question: Do you agree with "benevolent deception" or would you rather get too much information via the internet?
Question: How do you feel about using inmates as test subjects?
Discuss: Southam withheld "emotionally disturbing but medically nonpertinent" information from his trial participants which led three young Jewish doctors to take a stand, comparing Southam's methods to the Nazi's and Nuremberg trials. Southam made use of a loophole since the participants weren't actually his patients he maintained it was common practice not to tell them. His lawyers even argued that hsi behavior was considered ethical in the field and that if everyone was doing it than it couldn't be unprofessional conduct.
Discuss: On page 193 Sonny said, "I didn't feel too much about the cells when I first found they was livin, ... Long as it's helpin somebody. That's what I thought." Then on page 194 he says "All they knew was that Gey had grown their mother's cells at Hopkins, someone somewhere was making money off of them, and that someone wasn't related to Henrietta Lacks. So, in an attempt to get Hopkins to give them what they saw as their cut of the HeLa profits, they made handouts."
How has HIPPA affected you personally? Do you think it is good or bad?
How do you think Michael Gold got Henrietta's records?
Discuss: On page 211 "and the dead have no right to privacy - even if part of them is still alive." Do you agree or disagree?
Question: Should HeLa be classified as a separate species? (ref. p. 215, last sentence).
Discuss: On page 205 the Supreme Court of California's definitive ruling said, "When tissues are removed from your body, with our without your consent, any claim you might have had to owning them vanishes. When you leave tissues in a doctor's office or a lab, you abandon them as a waste, and anyone can take your garbage and sell it. ... [The cells are] 'transformed' into an invention and were now the product of Golde's 'human ingenuity' and 'inventive effort'." Do you agree or disagree?
Question: Why include the arrest of Alfred (p. 258) other than as one more example of Deborah's determination?
Discuss: In Chapter 30, Rebecca goes to talk with Zakariyya:
- What did you think of the encounter overall?
- Were you surprised that Zakariyya thought his birth was a miracle and that it was all "God's handiwork" (p. 245)? Do you agree?
- In regards to George Gey, Zakariyya said, "What he did was wrong! Dead wrong. You leave that stuff up to God. People say maybe them takin her cells and makin them live forever to create medicines was what God wanted. But I don't think so. If He wants to provide a disease cure, He'd provide a cure of his own, it's not for man to tamper with." (p. 246) Agree or disagree?
- Zakariyya felt that Gey's lies and cloning without their knowledge was, "one of the most violating parts of this whole thing" and "the highest degree of disrespect". (p. 246) Agree or disagree?
Question: What made Zakariyya so mean:
a) " 'I think them cells is why I'm so mean,' he said. 'I had to start fightin before I was even a person. ... I started fightin when I was just a baby in her womb, and I never known nothin different.' " (p. 247-248)
b) The loss of his mother
c) " 'That eveil woman Ethel taught him hate,' she said. 'Beat every drop of it into his little body - put the hate of a murderer into him.' " (p. 248)
d) Using HeLa cells without the family's knowledge
Question: Do you think the Marvel comic book character is patterned after HeLa? (p. 254)
Discuss: Deborah consistently believes her mother's spirit causes things to happen, usually mischievous things. Yet the biggest honor she would receive was thwarted with 9/11. How does that reconcile? Did you realize when you read on page 257 about the upcoming conference that it wouldn't happen?
Discuss: Cristoph thought they should, "treat valuable cells like oil... . When you find oil on somebody's property, it doesn't automatically belong to them, but they do get a portion of the profits." (p. 267) Agree or disagree?
Question: What did you think of Deborah's behavior on their road trip? Could you have handled it? Was Rebecca right or wrong to lose her patience with Deborah?
Question: If you had been Rebecca in the room when Gary got religious on Deborah what thoughts would've gone through your mind? What would you have said or done?
Discuss: Ms. Skloot says, "In that moment, reading those passages, I understood completely how some of the Lackses could believe, without doubt, that Henrietta had been chosen by the Lord to become an immortal being. If you believe the Bible is the literal truth, the immortality of Henrietta's cells makes perfect sense. Of course they were growing and surviving decades after her death, of course they floated through the air, and of course they'd led to cures for diseases and been launched into space. Angels are like that. The Bible tells us so." (p. 296) Are they? Does it?
Discuss: How do you think tissue collection, storage and research should be handled? Points to consider:
What if research is on something the donor opposes
Who can access so it is not used against the donor
Fetal blood samples can trace to baby of origin violating privacy
Is their a moral obligation on everyone's part for scientific advancement
"...it's weird to say everybody gets money except the people providing the raw material." (p. 323)
Discuss: "I decide who gets my money after I die. It wouldn't harm me if I died and you gave all my money to someone else. But there's something psychologically beneficial to me as a living person to know I can give my money to whoever I want. no one can say, 'she shouldn't be allowed to do that with her money because that might not be most beneficial to society.' But replace the word money in that sentence with tissue, and you've got precisely the logic many people use to argue against giving donors any control over their tissues." ( p. 321)
Discuss: "It's illegal to sell human organs and tissues for transplants or medical treatments, ut it's perfectly legal to give them away while charging fees for collecting and processing them." (p. 322)
Serve fried eggs because Professor Defler said that's what a cell looked like under a microscope (p. 3). Years ago I saw a recipe related to April Fool's Day: Spread marshmallow cream on a plate. Put a dollop of butterscotch pudding in the middle to look like an egg yolk. You could even do this on small, clear plastic plates like Petri dishes so your guests can just pick up their own individual egg/cell. I saw a similar recipe in All You magazine's February 22, 2013 issue; I provide the link not knowing how long they keep the archive up.
Serve grape jello like Dr. Jones explained Henrietta's cervical cancer lesion on page 17. If you don't find grape jello, use unflavored gelatin and substitute purple grape juice for the water, following package directions.
Serve bottles of seltzer. Well, maybe not. As I went to find a link to a picture of the Bromo seltzer logo so you could relabel your bottles of seltzer, it appears that it was a product like Alka-seltzer, not bottled seltzer water.
I have a friend who is a professional baker. Since I was ordering college graduation cookies I ordered an extra half-dozen and asked her to make books. She didn't have a book cutter so she did round circles and iced them the same orange color of the book's cover. It was a beautiful match since there was a circle pattern on the cover anyway, representing the cells. I also served V8 Spalsh because it is about the same color.