The Immortal Life of Henrietta Lacks

Nonfiction | Biography | Adult | Published in 2010

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Chapters 23-25Chapter Summaries & Analyses

Part 3: “Immortality”

Chapter 23 Summary

This chapter covers 1973-1974. Lawrence’s wife, Bobbette, is chatting to her friend Gardenia’s brother-in-law, who happens to work at the National Cancer Institute. When Bobbette mentions that her married name is Lacks, Gardenia’s brother-in-law tells her about HeLa: “I just read this article that said they came from a woman named Henrietta Lacks” (180). Bobbette insists it must be someone else with the same name, but as the man reveals the information he knows about this woman, Bobbette realizes it must be her late mother-in-law. Having read stories about horrific research such as the Tuskegee syphilis studies, Bobbette and the rest of the Lacks family are frightened by the news, thinking the researchers will also come for Henrietta’s family.

Around the same time, Victor McKusick and other researchers discussing the HeLa contamination problem decide they need DNA samples from Henrietta’s immediate family to help them identify HeLa from other cells. When they call Day Lacks to ask for blood samples from him and his children, they do not fully explain the reasons for this. Day agrees to the samples, but he is under the impression that they are testing the family to see if they have the same cancer that killed Henrietta. Deborah is particularly anxious, as she is now approaching the age her mother was when she was first diagnosed. The samples are taken just days before a new law comes into effect, requiring IRB (Institutional Review Board) approval and informed consent for all federally funded research.

Chapter 24 Summary

In 1975, Michael Rogers, a reporter for Rolling Stone magazine, publishes an article about the woman behind HeLa. When Henrietta’s family members read the article, they discover that scientists are selling vials of HeLa. Sonny and his brothers are furious that people are making profits from their mother’s cells and feel strongly that they are entitled to a share. Deborah is less concerned about the money; instead, she worries if her mother’s cells feel pain when they are experimented on: “When she found out scientists had been using HeLa cells to study viruses like AIDS and Ebola, Deborah imagined her mother eternally suffering the symptoms of each disease” (196). She is also worried about her own health, having been given the impression that she was being tested for cancer, she is anxiously awaiting results that will never come.

Chapter 25 Summary

This chapter covers 1976-1988. While Henrietta’s family are struggling with the knowledge of HeLa and the feeling that they have been exploited, Skloot cites an example of another case which was taking place around the same time. In 1976 John Moore was diagnosed with leukemia; he was treated by David Golde, a cancer researcher at UCLA, and his spleen was removed. After years of follow-up appointments, he became suspicious in 1983 when he was asked to sign a consent form waiving all rights to “any cell line or any other potential product which might be developed from the blood and/or bone marrow obtained from me” (200).

He discovered that Golde had filed for a patent on Moore’s cells and entered into a multi-million-dollar agreement with a biotech company regarding the scientific investigation and commercial development of the cells. In 1984, Moore sued Golde and UCLA for deception and for using his body for research without consent. The case was thrown out of court, but in 1988, Moore won an appeal. However, Golde counter-appealed and won. The Supreme Court of California stated that once tissues were removed, they no longer belong to the patient. However, the judge did agree that Golde should have disclosed his financial interests. The Moore case sparked widespread debate amongst scientists, lawyers, ethicists, and the media regarding the ownership of human tissue. The Lacks family knew nothing about it but continued to tell people that John Hopkins had stolen their mother’s cells.

Chapters 23-25 Analysis

The Lacks family, who know about Tuskegee and other unethical research projects on black people, are shocked by the discovery that Henrietta’s cells are still alive. It is also notable that they were not informed by scientists—they found out merely by accident. Even when they speak to the scientific community, no one gives them clear information and, consequently, they struggle to understand how part of Henrietta could still be alive.

When the family are asked to give blood samples, the notion of “informed consent” comes to the forefront; they are not given adequate information and have no idea what they are consenting to. When Rogers interviews them for his Rolling Stone article, he realizes that the family has been badly treated and misinformed. The publication of the article exposes another ethical problem—various companies are selling HeLa for profit, and Henrietta’s sons feel they have a right to assert ownership of their mother’s cells and receive a share of the profits. This is not merely a private issue for this particular family: the Lacks family’s discovery of HeLa coincides with the notorious John Moore case, which brought these issues to the attention of the media and the public and resulted in intense debate all over the world.