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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Discussion Topic

Analysis of Key Requests and Their Implications in "The Immortal Life of Henrietta Lacks"

Summary:

The key requests in "The Immortal Life of Henrietta Lacks" revolve around Henrietta's family's desire for recognition, justice, and control over her cells. These requests highlight ethical issues in medical research, including consent and compensation. The family's struggle underscores the broader implications of bioethics and the need for reform in how patients' rights are handled in scientific advancements.

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What does Henrietta's final request in chapters 8–11 of The Immortal Life of Henrietta Lacks reveal about her?

Henrietta's final request was that her husband Day take care of her children.

What this tells us about Henrietta is that she is an incredibly caring mother who wants nothing but the best for her children. She knows that she doesn't have much longer to live, but her last thoughts aren't about herself, but about the people in her life who mean so much to her. That indicates just what a selfless woman Henrietta really is.

Henrietta is particularly concerned about her disabled daughter, Elsie, who's been put in an institution in Virginia. Henrietta knows just how challenging life will be for someone in Elsie's position. It's therefore all the more imperative that she get the treatment she needs.

Sadly, this doesn't turn out to be the case, and Elsie dies only four years later in truly deplorable conditions at the hospital. Other problems beset Henrietta's family in the wake of her death, such as her widower Day coming down with cancer. Her daughter Deborah also experiences health problems.

Henrietta's hope that her daughters be well taken care of may have been a case of wishful thinking, but there's no doubt that her wishes were genuine and that they showed she had a very kind heart.

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What does Dr. Hsu's request in chapter 23 of The Immortal Life of Henrietta Lacks reveal about her attitude towards the Lackses and the significance of Skloot ending the chapter with this request?

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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What does Dr. Hsu's request in The Immortal Life of Henrietta Lacks reveal about her attitude toward the Lacks family and Skloot's intention?

At the end of chapter 23 of The Immortal Life of Henrietta Lacks, Susan Hsu asks author Rebecca Skloot if she can draw still more blood from the Lacks family members in order to continue her research into their genetic makeup.

To understand the meaning of this request, we have to look back a little bit. Henrietta died of cancer in 1951, but researchers kept alive a cell line from her and used it in many different projects over the years. The cell line is called HeLa. But by 1973, researchers were concerned that the cell line was becoming contaminated. They wanted to know for sure which cells originated from Henrietta, and to find that out, they had to collect DNA from her descendants and examine the genetic markers.

Lead geneticist Victor McKusick sent Susan Hsu to draw blood from the Lacks family. Hsu didn't speak English very well, and the Lacks family members didn't understand exactly what she wanted to do or why. They were actually under the impression that they were going to be tested for cancer, and this scared them, especially Henrietta's daughter, Deborah, who was terrified of dying of cancer like her mother.

The family agreed to the blood draw, but they never signed an informed consent form, because in those days, such was not needed for the collection of blood or tissue. A law has since been passed requiring informed consent. But for years, the Lacks family was under the mistaken impression that they were being tested for cancer rather than examined for genetic markers.

Rebecca Skloot talks to Susan Hsu during her research for the book, and Hsu is shocked that the Lacks family members never understood what was really going on. She always thought they did. She isn't particularly remorseful about the misunderstanding, though. Clearly her focus is still very much on her research rather than on the family's fear and distress. She tells Skloot to express how grateful she is for Henrietta and her cell line, but then, she rather tactlessly asks for more blood from the family.

It seems that Hsu's research is the most important thing to her. The Lacks family members seem to be merely research subjects rather than human beings with emotions and anxieties. Hsu assumes they understand, but she doesn't bother to make sure the family knows the details. They seem to be merely a side note to her studies, and this is unfortunate.

Skloot includes this incident to show the attitude of some researchers who are so completely absorbed by their projects that they forget there are human beings involved in them, human beings with feelings and fears. This is a major problem in scientific research and one that should be addressed so that human beings can always be first rather than projects.

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