portrait of Henrietta Lacks with lines building on her image to a grid of connected dots

The Immortal Life of Henrietta Lacks

by Rebecca Skloot
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What does Dr. Hsu's request at the end of chapter 23 of The Immortal Life of Henrietta Lacks reveal about her attitude towards the Lackses? What does Skloot reveal by ending the chapter with Hsu's request? Why do you think Hsu has this attitude?

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In chapter 23, Rebecca Skloot explains how, in 1973, Bobette Cooper Lacks became the first member of the Lacks family to learn that some of Henrietta Lacks’s cells are still alive. At roughly the same time, during the First International Workshop on Human Gene Mapping held at Yale University in...

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In chapter 23, Rebecca Skloot explains how, in 1973, Bobette Cooper Lacks became the first member of the Lacks family to learn that some of Henrietta Lacks’s cells are still alive. At roughly the same time, during the First International Workshop on Human Gene Mapping held at Yale University in Connecticut, scientists decided to locate Lacks family members and secure their assistance in stopping the “HeLa contamination problem.” This would require obtaining DNA samples from them and creating a gene map.

Victor McKusick, a conference participant, knew that Henrietta’s husband and children were patients at the Johns Hopkins University (JHU) medical center, where he was a staff physician. As a genetics research scientist, McKusick was also the supervisor of Susan Hsu, a postdoctoral researcher at JHU and another conference participant. On his instructions, once she returned to Baltimore, she began contacting Lacks family members to have their blood drawn.

In this chapter, Skloot also reviews the state of informed consent regulations in the 1960s–1970s. As early as 1966, National Institutes of Health (NIH) guidelines had established requirements regarding informed consent and institutional review. Within JHU, revisions that had been made in 1971 still were under review in 1974, when Deborah was first approached about giving blood. JHU, like many research facilities, was inconsistent in following the guidelines. More stringent regulations were put in place in 1974, when the federal law requiring Institutional Review Board (IRB) prior approval of medical research that received federal funding, went into effect.

When Skloot interviewed her, Susan Hsu stated that in McKusick’s genetics research department, staffers did not provide consent forms to sign in advance to people who were asked to give blood. She believed that drawing blood was exempt from informed consent regulations because the department was not conducting medical research. She claimed not to have known in the 1970s that none of the family members had previously been consulted about the use of Henrietta’s cells.

The message that she gave Skloot to pass to them indicated her gratitude and opinion that it was “‘unfortunate…what happened.’” She asked Skloot to tell them that “‘they should be very proud’” of Henrietta. Hsu’s opinion was the family members’ possible anger came from their not realizing “‘how famous the cells are now in the world.’” Her lack of empathy and unwillingness to acknowledge that members of the medical community had personal responsibility are consistent with other researchers’ opinions expressed in the book, as she refers to “what happened” rather than what individuals did or failed to do. Hsu also dehumanizes Henrietta by referring to her as “a famous thing.” She further indicates her lack of understanding by commenting that she would draw more blood if the Lackses were willing.

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