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Deborah’s blood pressure and blood sugar levels were so high that she could easily have had another stroke. Because the doctor told her to avoid stress, she stopped coming on research trips with Skloot, but asked that Skloot call her with updates.
Deborah decided that she wanted to learn more about science and signed up for adult education classes. Skloot worried about Deborah’s health as the Research for Cancer Foundation Conference approached, but Deborah insisted she was okay.
Right before the conference, Zakariyya and Lawrence told Deborah not to talk to anyone. Sonny told them to let her make her own choices, but Lawrence demanded Deborah give him all of Henrietta’s records that she had gathered.
The conference was scheduled for September 11, 2001. The terrorist attacks shut down D.C., and the Research for Cancer Foundation had to cancel the conference.
Five days later, Deborah had a stroke in church, but fortunately made a complete recovery. The stroke increased Deborah’s determination to learn more about science. Unfortunately, Deborah didn’t have the money to cover course expenses and couldn’t continue her studies. She decided to focus on making sure her grandchildren and grand nieces and nephews got an education.
Two months later, Skloot attended the baptism of Sonny’s granddaughter at Pullum’s church. Pullum brought Skloot to the pulpit and asked her to tell the congregation about her work on Henrietta and her cells. Pullum acknowledged that the Lacks children would probably never benefit from their mother’s cells but at least the world would know her name. He said her grandchildren would have to take inspiration from Henrietta and try to change the world.
On July 18, 2009, Skloot drove to Clover only to discover that the town had been razed. At this point, it felt like everything related to Henrietta was dying. The years had seen the death of many family members, including Day, Gary, and Cootie. Sonny had a quintuple bypass surgery in 2003 that left him in debt. Zakariyya had been kicked out of multiple housing situations. Deborah had left Pullum and moved into an assisted-living apartment.
Skloot had been on her way to Clover to help Deborah read the manuscript of this book. Deborah hadn’t been returning her calls. Skloot assumed Deborah needed space to process the book being done, but after not hearing from Deborah for months, she called Sonny. Sonny told Skloot that he’d been looking for her phone number because Deborah had passed away from a heart attack just after Mother’s Day.
Sonny assured Skloot that Deborah had been happy. Erika, Lawrence and Bobette’s granddaughter, had recently become the first Lacks to go to graduate school.
Skloot remembered when Deborah had showed her a video tape that hadn’t made it into the BBC documentary. Deborah showed the interviewer Henrietta’s Bible and told them she often looked at her mother’s hair because it made her feel less alone. She said she wondered what it would be like to have a mother and said that she hoped she get to see her someday. The day they watched that video, Deborah told Skloot that maybe she’d come back as HeLa cells so she and her mother could do good in the world together.
The afterword explores the status of the cell research and ownership debate as of 2010. Most Americans have their tissue on file from various routine procedures. The law is nebulous as to how much ownership people have over their cell samples.
There are two primary issues in the debate: consent and profit. While doctors require consent to take tissue from a patient for research, they don’t need permission to use a sample taken for a diagnostic procedure for research. Tissue rights activists argue that patients deserve a say in how their tissues are used and raise concerns about patient privacy. However, some doctors argue that the interest of public health outweighs worries over consent and privacy.
The other primary concern is profit. The people who donate the tissues used in research don’t receive compensation, and no one can agree on how to change that. Gene patents are also a problem. Pharmaceutical companies, scientists, and universities control patents, meaning that they control what research is done on those genes and the price of tests on those genes.
Skloot concludes by examining what legal options the Lacks family have. Some lawyers suggested to Skloot that since Henrietta’s children have some of the same DNA as HeLa cells, they could argue research on HeLa cells is research on them. According to what’s called the common rule, a research subject may withdraw from the research at any time. Therefore, the Lacks children could demand the cells be withdrawn from research. It would be a long shot. Sonny told Skloot that he didn’t want to hurt science, and Deborah wouldn’t have wanted that either. He just wanted someone to make amends with their family.
Skloot finding the answers and offering her support couldn’t fix all the harm done to the Lacks family. Deborah’s health worsened from the emotional and physical stress and trauma of finding out the truth about her mother, sister, and HeLa cells, a toll that likely contributed to her fairly early death. She even had to give up going with Skloot on research trips, sacrificing her desire to be part of the process of discovery for her health. We have seen throughout the book how the anxiety caused by repeated trauma from both abuse and from the ordeal of learning about HeLa cells contributed to Deborah’s health problems. That she could no longer participate in the investigation in ways she actively wanted to highlights how distressed she was. In addition, Skloot’s efforts couldn’t help the Lacks escape their poverty. Deborah couldn’t afford to continue her education and had to give up on her dream of learning science that would help her feel even closer to her mother’s cells. Sonny still went into debt over a medically necessary surgery. While Skloot’s work may have helped the family understand what happened better, truth is not the same thing as reparations or justice.
The clash between Deborah and Lawrence shows that people have different ways of dealing with trauma. Deborah’s coping mechanism for the HeLa ordeal was always to learn more. Whether by googling “HeLa” or signing up for adult education courses, Deborah believed that knowledge would help her feel less afraid of what she didn’t know. Because of this, Skloot, with her willingness to be transparent and share her research, offered Deborah a new way to deal with her trauma that worked with her extant coping mechanisms. Conversely, Lawrence’s reaction to anything having to do with HeLa cells involved a desire for legal retribution. Lawrence continually discouraged Deborah from working with Skloot because he wanted the family to maintain control over the records and narrative, which could not happen if Skloot wrote her book. Ultimately, Deborah and Lawrence wanted different things from their mother’s scientific legacy. Deborah wanted to connect with HeLa cells and discover the information her family had been denied. Lawrence wanted to regain some measure of control over them, and reclaim his mother’s legacy for the family.
Skloot and Deborah work to transform Henrietta’s legacy into education for future generations of the Lacks family. The visit to Lengauer’s lab both showed Deborah that science was a way for her to connect with and understand her mother’s scientific legacy, and made science seem accessible to her because of Lengauer’s willingness to teach. This experience made Deborah feel that science education was within her reach and that there was a way for her and her family to understand HeLa cells as their mother’s legacy. When she could not afford education for herself, Deborah focused on her and her siblings’ grandchildren because the future generations of Lackses are her own legacy. She saw education as a way to help break the cycle of racialized poverty for her family. Furthermore, we can read her desire for education for the next generation as a hope that they will not live in fear and trauma of HeLa cells, but rather be able to understand and participate in their legacy. As part of her commitment to Deborah and the Lacks family, Skloot set up her foundation, mentioned in Chapter 31, to have a strong educational focus.
Deborah’s interview about Henrietta’s Bible shows how HeLa cells cannot be separated from Henrietta as a person. In the interview, Deborah mentioned that she goes to Henrietta’s Bible when she misses her mother, showing that the Bible with its lock of hair is symbolic of Henrietta as a loving mother. Deborah brought out her Bible during this documentary about HeLa cells because, to Deborah, both the cells and the Bible are part of Henrietta’s living memory. Although the documentarians didn’t use this footage, presumably because they felt it was irrelevant, Deborah’s lack of distinction between Henrietta as a mother and Henrietta as HeLa reminds us that they are the same person. The documentarians’ callousness on this point once again underscores that just because a story is designed to be about science or research doesn’t mean that the personal aspect of the story can be ignored. Deborah’s later comment to Skloot that she would like to be reincarnated as HeLa cells shows Deborah making peace with Henrietta’s scientific legacy.
Skloot uses the afterword to demonstrate how difficult it is to discover a just and ethical solution for cell research. Although she advocates for a clear and consistent process for consent, she acknowledges that different stakeholders in the process of research have different goals and want different levels of control over this process, making the questions of consent and of procedure extraordinarily complex. Profit proves to be an even murkier issue because of money’s ability to limit and control who gets to do research and access to medicine. These two issues reflect the different opinions of the Lacks children. Throughout the book, Deborah and Lawrence clash over their ideas of what they want for the future of HeLa and what they felt their compensation should be. In addition, the sheer amount of complicated and convoluted legal logic that could allow the Lacks family control over HeLa cells emphasizes how messy the laws surrounding cell research truly are, and also how difficult it is to right wrongs decades after they were committed. Worse, the ubiquity of HeLa cells means that for the Lacks family to take legal action, they would actively hurt scientific research.
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