the immortal life of henrietta lacks part 3

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. 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). No commentary from Skloot on whom to believe.īut the use of Susan Hsu’s quotation at the end of the chapter gives us a hint of Skloot’s sentiment. 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). 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. 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.Īnother example of journalistic fairness: Deborah remembers meeting McKusick once when she went to Hopkins to give blood on 26 June 1974. 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.ĭiscussion of HEW and the federal law instituted 30 June 1974 - IRB “approval and informed consent for all federally funded research” (187). Skloot can condemn just see her passages on Southam and his experiments. 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. 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). 40 years - it takes 40 years to stop the Tuskegee syphilis horror. 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).

The huge ghost hovering over this discussion is Tuskegee - as Skloot says about Bobbette: “It was like a nightmare. So - Hsu and McKusick acted unethically, and they should have known this - but Skloot gives them some wriggle room.

They were in the process of being codified into law when Hsu called Day” (183-4).

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. 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. 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.Īnd 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. The first 2-3 pages of the chapter portray Bobbette’s surprise and frustration well. Bobbette runs home and tells Lawrence, who calls Johns Hopkins to ask about his mother’s cells. 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.

The immortal life of henrietta lacks part 3