Chapter 23 – 1973-4 – Turning point for the Lacks family — Bobbette finds out by chance — from her friend Gardenia’s brother-in-law who worked at the National Cancer Institute — that Henrietta’s cells are still alive. Bobbette runs home and tells Lawrence, who calls Johns Hopkins to ask about his mother’s cells. The first 2-3 pages of the chapter portray Bobbette’s surprise and frustration well. As a reader, I know things are going to get worse as the family processes the information — twenty-two years after Henrietta’s cells are taken, her family learns those cells are not only alive, they are also bought and sold for research.
And here’s an example of Skloot’s fairness in reporting — the discussion of consent and the status of research guidelines on pages 183-4 — Skloot gives both Susan Hsu (the postdoc fellow working with Victor McKusick, whom McKusick commanded to get blood from Day and Henrietta’s children) and Victor McKusick the benefit of doubt. Hsu said they didn’t need a consent form because they were just drawing blood: “Although this attitude wasn’t uncommon at the time, NIH guidelines stipulated that all human subject research funded by NIH — as McKusick’s was — required both informed consent and approval from a Hopkins review board. Those guidelines had been implemented in 1966, in the aftermath of the Southam trial, and then expanded to include a detailed definition of informed consent in 1971. They were in the process of being codified into law when Hsu called Day” (183-4). So — Hsu and McKusick acted unethically, and they should have known this — but Skloot gives them some wriggle room. The huge ghost hovering over this discussion is Tuskegee — as Skloot says about Bobbette: “It was like a nightmare. She’d read in the paper about the syphilis study at Tuskegee, which had just been stopped by the government after forty years, and now here was Gardenia’s brother-in-law, saying Hopkins had part of Henrietta alive and scientists everywhere were doing research on her and the family had no idea” (180). 40 years — it takes 40 years to stop the Tuskegee syphilis horror.
I like this chapter as an excellent example of Skloot’s interweaving of narrative strands — the current time in 1973 when Bobbette learns that Henrietta’s cells are alive, to a place much different at about the same time — the First International Workshop on Human Gene Mapping at Yale University, then back to Day and Hsu’s interaction (and the rest of the chapter). And I like it as an example of Skloot’s ability to present differing perspectives even-handedly: she does not condemn Hsu or McKusick’s decision not to obtain consent but places that action in historical context, and she does not condemn Day’s or Bobbette’s reactions, but also presents them in context. Skloot can condemn; just see her passages on Southam and his experiments.
In the rest of the chapter, we learn more about Deborah — her fear that she’d die around the same time her mother did from the same cancer, her life (two low-paying jobs, two kids, no child support), her fears about what researchers were doing with her mother’s cells.
Discussion of HEW and the federal law instituted 30 June 1974 — IRB “approval and informed consent for all federally funded research” (187). HEW — Department of Health, Education, and Welfare — in 1979, Department of Education was established, and HEW morphed into HHS, the current Department of Health and Human Resources.
Another example of journalistic fairness: Deborah remembers meeting McKusick once when she went to Hopkins to give blood on 26 June 1974. Deborah remembers that McKusick gave her a copy of Medical Genetics, signed the copy (he edited it), and showed her the paragraph with her mother’s name. When Skloot interviews McKusick many years later (he’s 79), McKusick does not remember the incident at all and says he never had “firsthand contact with the family” (189). No commentary from Skloot on whom to believe.
But the use of Susan Hsu’s quotation at the end of the chapter gives us a hint of Skloot’s sentiment. Skloot ends with this: “The she asked if I’d tell the Lacks family one more thing for her: ‘If they are willing,’ she said, ‘I wouldn’t mind to go back and get some more blood’” (190). Hsu has just told Skloot that she was shocked that the Lacks family didn’t understand that they were not being tested for cancer but that their blood was being drawn to study genetics. Hsu asks Skloot to tell the family how proud they should be of Henrietta, how grateful Hsu is. Nevertheless, the final quotation leaves us with that echoed request and the implication is that no matter how anyone felt, the result remains the same: the family’s physical and biological material was taken and used — immensely, widely, and at profit — without the family having given consent or knowing.
Chapter 24 – 1975 – Before even getting too far, I had to google Michael Rogers, the author of the Rolling Stone‘s article on Henrietta Lacks. Anyone who got a degree in creative writing and physics from Stanford by age 19 has to be interesting. Rogers works now as The Practical Futurist at MSNBC and has an informative website. I’m going to check out his Practical Futurist column later.
Skloot addresses profit clearly — “At that point no one in Henrietta’s immediate family except Deborah seemed particularly upset about Henrietta’s story or the existence of those cells” (193) until Rogers’ Rolling Stone article appears and announces that a vial of HeLa cells sold for $25. As Skloot writes, “With that paragraph, suddenly the Lacks brothers became very interested in the story of HeLa” (193).
This chapter marks Deborah’s intense questions — how much her relationship with her mother molds her fears and hopes. The diary entry on pages 195-6 is powerful — from Deborah’s reference to her upbringing which mandated silence to her tortured imaginings of her mother’s pain and aloneness on the day she died. Deborah’s research shows courage and tenacity.
The chapter ends by indicating the broader concerns implicit in Henrietta’s story — as Skloot mentions that the Lacks family did not know that Susan Hsu and Victor McKusick had published in a journal the results of taking the family’s blood, and if they had known, they would not have been able to afford a lawyer to fight the public knowledge — Skloot then indicates a similar case across the country, and we know the next chapter will deal with John Moore’s case.
Chapter 25 – 1976-1988 – From the first paragraph: “It turned out that at the age of thirty-one, Moore had hairy-cell leukemia, a rare and deadly cancer that filled his spleen with malignant blood cells until it bulged like an overfilled inner tube” (199). This chapter details the history of patenting living organisms — 1980 Supreme Court ruling which declared that Ananda Mohan Chakrabarty could patent a bacterium he “genetically engineered to consume oil and to help clean up oil spills” (201). Patenting cell lines, however, did not “require informing or getting consent from the ‘cell donors’” (201). 1988 Supreme Court of California judged against George Moore’s claim for rights to the products from his spleen cells — the ruling stated that any tissues left in labs or doctors’ offices are considered abandoned and available for anyone to use. Creepiest quotation in the chapter comes from the dean of the Stanford University School of Medicine, who “told a reporter that as long as researchers disclose their financial interests, patients shouldn’t object to the use of their tissues. ‘If you did,’ he said, ‘I guess you could sit there with your ruptured appendix and negotiate’” (206). Wow. Hubris, much?
Chapter 26 – 1980-1985 – This chapter updates us on Deborah’s family. Zakariyya is out of jail and homeless. He sleeps on a bench across from his father’s home; his father invites him in; Zakariyya refuses — he blames Day for Henrietta’s death, for leaving the children with Ethel to get abused. Sonny is in jail, and Deborah’s son, Alfred, gets into more and more trouble. Michael Gold’s book, A Conspiracy of Cells: One Woman’s Immortal Legacy and the Medical Scandal It Caused, is published in 1985. Deborah reads it and falls apart at the description of her mother’s horrifically painful death. When Skloot asks Gold if he interviewed the family, Gold responds to Skloot that “the family wasn’t really my focus. … I just thought they might make some interesting color for the scientific story” (211). Intriguing choice of words. And it’s clear that Skloot’s book is the obverse of Gold’s.
Chapter 27 – 1984-1995 – Chapter begins by discussing Harald zur Hausen’s discovery in 1984 of HPV-18. First sentence of chapter: “More than thirty years after Henrietta’s death, research on HeLa cells finally helped uncover how her cancner started and why her cells never died” (212). Zur Hausen “requested a sample of Henrietta’s original biopsy from Hopkins” (212), and he found that “Henrietta had been infected with multiple copies of HPV-18, which turned out to be one of the most virulent strains of the virus” (212). Harald zur Hausen developed the HPV vaccine and won the Nobel Prize in 2008.
Focus is on immortality of HeLa cells, discussion of Hayflick limit — that normal cells divide about 50 times before they die. Cells have a kind of tail, called a telomere, and that shortens every time a cell divides. HeLa cells contain telomerase, an enzyme that builds telomeres. Here’s the final sentence of the chapter: “It was this immortality, and the strength with which Henrietta’s cells grew, that made it possible for HeLa to take over so many other cultures — they simply outlived and outgrew any other cells they encountered” (217).
Chapter 28 – 1996-1999 – This chapter is a fascinating history of the BBC documentary, the conference at Morehouse organized by Roland Patillo — who also convinced Atlanta to declare 11 October Henrietta Lacks Day — the participation of the Smithsonian, the Henrietta Lacks Health History Museum Foundation started by Courtney Speed, and the con by Cofield. So, cultural representations to honor Henrietta’s memory — and woven through all this is the main thread: Deborah’s journey. By the end of the chapter, Deborah finally has access to her mother’s medical records and reads them — and she learns about her sister, Elsie, and her commitment to Crownsville. Deborah calls the institution and then has a nervous and physical breakdown signaled by a severe outbreak of hives. The doctor at the hospital Deborah visits said Deborah’s blood pressure was so high, she nearly had a stroke. Skloot ends the chapter by mentioning her own entry into Deborah’s story — just a few weeks after Deborah gets out of the hospital, Roland Patillo contacts jer and advises Deborah to speak with the reporter, Rebecca Skloot.
Chapter 29 – 2000 – This chapter is one of the more poignant. First of all, there’s Christoph Lengauer, the cancer researcher at Hopkins who “framed a fourteen-by-twenty-inch print of Henrietta’s chromosomes that he’d ‘painted’ using FISH [fluorescence in situ hybridization]” (234) as a gift for Deborah, for the Lacks family. He also invited Deborah into the lab to see Henrietta’s cells. This chapter also describes Skloot’s first meeting with Deborah and the three days they spend in Baltimore talking about Deborah’s search for her mother. Skloot does a masterful job balancing Deborah’s knowledge and misconceptions, just as she shows us a woman who’s worked hard to understand her mother’s contribution to science and is paranoid about that history — when Deborah snatches the envelope containing her mother’s medical records away from Skloot, we understand Deborah’s panicked state and her pronouncement that she doesn’t know whom to trust.
Chapter 30 – 2000 – Love the narrative in this chapter, which reads more like a novel than a nonfiction book. The description of Deborah’s grandchildren playing around in the back seat of the car as Deborah drives Skloot to meet Zakariyyah; the description of Zakariyyah and how he reacts to reading Skloot’s article in the Johns Hopkins Magazine; Zakariyyah’s tears as he looks at Christoph Lengauer’s gift — the photo of Henrietta’s cells — and Zakariyyah’s agreement to go with Skloot and Deborah to see his mother’s cells at Hopkins. Skloot uses humor to address her own fears about meeting Zakariyya: “I hoped to see the age of thirty, and it seemed like being the first white person to show up at Zakariyya’s apartment asking questions about his mother might interfere with that” (241).
Chapter 31 – 2000-2001 – Skloot describes her deepening relationship with Deborah, from the ups and downs of contact — Deborah asked for repeated assurances that Skloot would tell her everything — and although Deborah was told by many to not trust a white person with Henrietta’s story, Deborah stands by her own convictions:
“Everybody always yellin, ‘Racism! Racism! That white man stole that black woman’s cells! That white man killed that black woman!’ That’s crazy talk,” she told me. “We all black and white and everything else — this isn’t a race thing. There’s two sides to the story, and that’s what we want to bring out. Nothing about my mother is truth if it’s about wantin to fry the researchers. It’s not about punish the doctors or slander the hospital. I don’t want that.” (251)
For the first time, a reporter or health care professional or someone with more knowledge finally shares all the knowledge with Deborah. Skloot sends Deborah her research — identifies what is fact or fiction, warns Deborah when something might be upsetting. Skloot invites Deborah on her research trips. Skloot introduces Deborah to Google, and Deborah stays up nights researching. She becomes more organized in her research. At the end of the chapter, Deborah has agreed to go see her mother’s cells, but she gets a call that her son Alfred has been arrested. Clearly upset, Deborah still wants to see the cells.
Chapter 32 – 2001 – May 11, 2001, Skloot, Deborah, and Zakariyya visit Christoph Lengauer at Hopkins. Christoph shows them the freezers, shows them HeLa — climax of the book, I think, occurs when Deborah holds a vial of her mother’s cells. Lengauer shows Deborah and Zakariyya how to use the microscope, draws information about cells, and tells them that Hopkins screwed up and that the Lackses should get money from the cells. The chapter is powerful — Zakariyya and Deborah finally see their mother’s cells.
Chapter 33 – 2001 – Skloot reminds us that the second thing she promised Deborah was to find out what happened to Elsie, so Deborah and Rebecca go on a trip the day after they see Henrietta’s cells. The visit to Crownsville yields an autopsy report on Elsie Lacks and a horrific picture of her — she is crying and being held by white, manicured, female hands so that her face faces the camera. Deborah gets a copy of the records and the picture. One of the administrators gives Skloot articles on Crownsville describing conditions in the 50s. As Skloot writes, “The Crownsville that Elsie died in was far worse than anything Deborah had imagined” (275). Since Elsie was diagnosed an epileptic, she likely underwent the inhumane experiments done on epileptics (extracting fluid around brain and then allowing brain to refill — takes 2-3 months, during which time the victim has agonizing headaches).
Chapter 34 – Chapter 33 ends with Deborah giving Henrietta’s medical records to Skloot. Chapter 34 discusses what Skloot finds — and we hear very little about the medical records. The chapter describes how Deborah comes into Skloot’s room to look at the records and how Deborah finally attacks Skloot, who then loses her patience with Deborah for the first time. Deborah explains the importance of the medical records to her and her family and also tells Skloot about the Cofield con.
Chapter 35 – 2001 – Deborah and Rebecca travel to Clover and go to Gladys’s house (Henrietta’s sister). Deborah has become more and more erratic and agitated all day, holding pictures of her sister. In Clover, Deborah has Skloot take pictures of Deborah holding pictures of Elsie near Henrietta’s grave. Deborah’s cousin Gary comes home to Gladys’s house, and then Gary does a ritual-sermon-prayer over Deborah — Deborah and Gary ask for the cells to be lifted from Deborah. And Gary asks that the cells be given to Rebecca. The last line is great. Deborah says to Skloot, “You ready for some soul cleansing?” (293)
Chapter 36 – 2001 – This short chapter (3 pages) states that Deborah goes home to see her doctor to deal with the hives that still cover her body. Rebecca goes back to visit Gary and he has her read from the Bible (for the first time in her life). Skloot offers the Lackses’ interpretation of Henrietta as an immortal angel as something that makes absolute sense in the Bible. This chapter exemplifies the failure (?) of science writing.
Chatper 37 – 2001 – Sept. 11 happens and the National Cancer Foundation reception is cancelled, so Deborah does not give her speech. She has a stroke in church. Gets out of the hospital. Deborah and Rebecca go to church for a baptism and Deborah’s husband, Reverand Pullum, calls Skloot up to the pulpit to tell the story of Henrietta’s cells. Pullum ends by saying the story now belongs to the next generation, who now know their grandmother and great grandmother helped the world — and that they can do the same.
Chatper 38 – 2009 – The final chapter — Skloot finds out about Deborah’s death a week and a half after it happens. Davon, Deborah’s grandson, finds her with a smile on her face. The final lines are Deborah’s: “But maybe I’ll come back as some HeLa cells like my mother, that way we can do good together out there in the world.” She paused and nodded again. “I think I’d like that” (310). The chapter starts out with a litany of death: first comes Clover, which mostly disappears; then comes Deborah’s cousin Gary of a heart attack at 52, Cliff’s brother Fred (throat cancer), Day (stroke), Cootie (suicide).
I like the image at the end of Deborah and Henrietta as HeLa cells, superhero healers.
Where They Are Now – lists major persons and follows up
Afterword – Skloot delineates the cell tissue controversy and discusses it in two broad terms: consent and money. Afterword emphasizes that these controversies are only just gearing up; we all need to think about our values, ethics, practices.