71 pages • 2 hours read
The Immortal Life of Henrietta Lacks
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Reading Questions & Paired Texts
Reading Check and Short Answer Questions on key points are designed for guided reading assignments, in-class review, formative assessment, quizzes, and more.
FOREWORD-CHAPTER 7
Reading Check
1. Who does Skloot say most influenced the writing of her book?
2. What were the two basic types of cervical cancer?
3. What kind of animal is George Gey compared to?
4. Which of Henrietta’s cells were immortal?
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. What was Henrietta informed about and not informed about in the consent form?
2. Why does Skloot mention the Tuskegee Syphilis Experiment and Mississippi Appendectomies?
3. What does Alexis Carell’s story contribute to the story?
4. What does preserving the clinical language of Henrietta’s symptoms and decline do in terms of argumentation?
Paired Resource
- Created in response to public testimony related to Nazi doctors’ brutal experiments on human beings, this code of ethics in medicine defined parameters and boundaries for medical research and care of human patients but was not a legally binding document.
- This article defines the connections between Scientific Ethics and Informed Consent.
- Examine the Nuremberg Code, paying particular attention to point #1. How does informed consent differ from consent? What rationale exists for making informed consent a foundational requirement of medical research and patient care?
CHAPTERS 8-14
Reading Check
1. Besides physical space and facilities, how did segregation manifest itself in hospitals like Johns Hopkins?
2. What did Henrietta always wish she could do for Cootie that her cells have done for millions since?
3. What emergency led to the development of the HeLa factory at Tuskegee?
4. What was not a protected right under the law when Henrietta died?
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. What is “benevolent deception” and how does this principle illuminate ethical gray areas in medicine?
2. In what way is the history of Clover relevant to this history of HeLa?
3. What is the symbolic significance of Henrietta’s chipped red toenail polish?
4. What is ironic about Henrietta’s cells?
Paired Resource
“Can Deceiving Patients Be Morally Acceptable?”
- This article by ethics lecturer Daniel K. Sokol that appeared in the National Library of Medicine argues that on rare occasions, “benignly deceiving” patients can be morally justified. The article includes a checklist to help doctors with this issue.
- This explores the theme of Scientific Ethics and Informed Consent.
- How were Sokol’s considerations, such as whether a deception would be defensible in a court of law, absent in the case of Henrietta Lacks? How do Agronin and Skloot use case studies to arrive at different conclusions as to the role of benevolent deception in medicine? Can both conclusions be right?
CHAPTERS 15-20
Reading Check
1. What code is responsible for the concept that informed consent is necessary in medical studies?
2. In Lacks’s time, what was the only avenue for enforcing medical ethics in the United States?
3. How does Stanley Gartler identify widespread HeLa contamination?
4. What cell principle does Gartler’s HeLa contamination claim overturn?
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. What limited the first legal definition of informed consent in US law?
2. What were scientists’ major objections to the idea of informed consent in medical research?
3. In what ways are the stories of Deborah and Joe’s childhoods connected to the story of HeLa?
4. Based on the information provided, what appears to be the result of benevolent deception and a lack of informed consent in all sectors of society?
Paired Resource
Primary Source: John Cutler’s 1947 Correspondence from National Archives
- Though preserved in the National Archives in its entirety, correspondence between John Cutler and John Mahoney on January 7, 1957 (PDF Page 6) offers opportunities to corroborate Skloot’s claims of widespread dehumanization and Racism in the Medical Community and support arguments for the need for ethical oversight.
- Shared themes include Racism in the Medical Community and Racism and Cycles of Poverty and Abuse.
- Compare Cutler’s tone and sense of priorities in his letter to Mahoney to the clinical language, responses, and correspondence Skloot has preserved in The Immortal Life of Henrietta Lacks. How do doctors’ and researchers’ own words help demonstrate widespread patterns of dehumanization and fears regarding oversight within the scientific community? To what degree might these patterns within the scientific community complicate researchers’ claims of plausible deniability of ethical misconduct regarding HeLa and the Lacks family?
CHAPTERS 21-25
Reading Check
1. Though she was diagnosed with an epidermic carcinoma of the cervix, what cancer does research reveal Henrietta really had?
2. Who is Bobbette afraid for when she hears that the National Cancer Institute was using her mother-in-law’s cells?
3. What else did researchers take without Henrietta’s permission?
4. When did patient confidentiality and protection from genetic discrimination become federally protected rights?
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. What harm has the legacy of experimentation on non-consenting Black Americans done to community relationships with Johns Hopkins and the wider medical establishment?
2. How does Nixon’s “War on Cancer” exacerbate ethical loopholes related to HeLa and other research?
3. How did the HeLa controversy help redefine the concept of “risk” to patients?
4. In what ways are Deborah Lack’s and John Moore’s experiences with repeated testing similar?
Paired Resource
“Understanding Ownership and Privacy of Genetic Data”
- Julien Segert explores the benefits and drawbacks of direct-to-consumer genetic testing in the digital age.
- This article explores gray areas of privacy, scientific ethics, and informed consent in relation to consumer genetic testing and data collection and sale.
- Based on Lacks’s experience and the case examples in Segert’s article, in what ways does the nature of genetic information complicate the concept of informed consent and potentially require the scientific community to expand its definition of harm?
CHAPTERS 26-38
Reading Check
1. For what did Harald zur Hausen use HeLa to win a Nobel Prize?
2. What trait does Deborah share with her mother?
3. What analogy does Christoph Lengauer use to illustrate his views on the commodification of cells?
4. What does Gary transfer from Deborah to Skloot?
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. How does Skloot use Michael Gold’s explanation of why he did not notify the family about including Henrietta Lacks’s medical history in his book?
2. What role does lack of information and truth play in Deborah’s tendencies to blur the line between fiction and reality?
3. What issues does the Crownsville hospital raise for Skloot regarding her ethical duty to Deborah?
4. What connection does Skloot make between science and religion?
Paired Resource
“Rebecca Skloot Explains How She Recreates Historic Events in her Writing”
- Skloot details the extensive sourcing and corroboration that goes into the recreation of historical nonfiction.
- Shared themes include Scientific Ethics and Informed Consent.
- What ethical considerations must Skloot and other writers consider when recreating the past, and what processes enable them to reconstruct scenes for which they were not present?
Recommended Next Reads
- This work of historical nonfiction follows the story of Elizabeth Parsons Ware Packard, a Victorian mother of six who was committed to Illinois State Hospital by her husband in retaliation against her growing independence. Moore examines the legal, ethical, scientific, and societal norms that allowed women to be imprisoned in “asylums” and the ramifications of her daring challenge to the status quo.
- Shared themes include Scientific Ethics and Informed Consent, sexism in the medical community, and sexism and cycles of abuse.
- Shared topics include historical examination of systems of oppression, exploration of the need for legal and ethical oversight in medicine, and examination of a little-known historical figure whose contributions shaped the modern world.
- The Woman They Could Not Silence: One Woman, Her Incredible Fight for Freedom, and the Men Who Tried to Make Her Disappear on SuperSummary
No Place to Hide by Glenn Greenwald
- Part human interest piece and part investigative exposé, Greenwald simultaneously examines the story behind NSA contractor Edward Snowden’s choice to leak evidence of pervasive governmental spying and abuse of power, and the implications of collusion between tech giants and government surveillance on human rights, individual freedom, and dignity.
- Shared themes include ethics in technology and informed consent.
- Shared topics include exploration of legal and ethical gray areas, exposure of ways in which citizens are not informed about the extent to which they are surveilled, and questions of consent in the digital age.
- No Place to Hide on SuperSummary
Reading Questions Answer Key
FOREWORD-CHAPTER 7
Reading Check
1. Henrietta Lacks’s family, especially Deborah (Prologue)
2. Invasive and noninvasive carcinoma (Chapter 3)
3. A vulture (Chapter 3)
4. The cancer cells (Chapter 4)
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. She gave consent for treatment and disposal of her tissues but was not informed that her cells would be used in research or that the procedure would cause infertility. (Chapter 5)
2. Citing other research and procedures done without informed consent supports the argument that experimentation on Henrietta’s cells without informing her or the family was a common practice and establishes a connection to institutional racism, since this was most often done with poor and nonwhite patients in public wards. (Chapter 6)
3. Carell, who developed the lifesaving procedures of suturing blood vessels that would allow for organ transplantation and bypass surgeries, was also a eugenicist. This character portrait serves to illustrate the point that in the absence of ethics and oversight, life-saving medical technologies often come from those with dubious ethics through dubious means. (Chapter 7)
4. The clinical language encourages reader sympathy and outrage because it is so dehumanizing and casual in its treatment of her intense pain. (Chapter 8)
CHAPTERS 8-14
Reading Check
1. Blood transfusions (Chapter 8)
2. Take away his polio (Chapter 10)
3. The polio epidemic (Chapter 13)
4. Patient confidentiality (Chapter 14)
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. Benevolent deception is the once-widespread belief that patients should be shielded from full disclosure of details of surgical procedures or diagnoses like cancer because patients who do not fully understand medicine will not understand the information. As a result, patients could not make informed decisions about treatment or consent to care. (Chapter 8)
2. Social details contextualize the systemic racism in medicine and society at large, establishing parallel patterns of poverty and abuse. Knowing Henrietta’s background helps to rehumanize the long-dehumanized HeLa cells. (Chapter 10)
3. For Mary, the nurse assisting Gey with preserving Henrietta’s cells during autopsy, the spot of color is what humanizes her, making her realize Henrietta was a real person. For Sadie, Henrietta’s cousin, the unkempt polish was a sign of Henrietta’s suffering. (Chapter 12)
4. There is something eerily poetic about the fact that the malignancy that killed Henrietta not only makes the cells immortal, but has allowed scientists to completely revolutionize medicine and save millions from diseases like polio. (Chapter 13)
CHAPTERS 15-20
Reading Check
1. The Nuremberg Code (Chapter 17)
2. Civil court (Chapter 17)
3. G6PD-A in non-HeLa cell lines (Chapter 20)
4. Spontaneous Transformation Theory (Chapter 20)
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. It defined informed consent between doctors and patients, but since researchers were not in a doctor/patient relationship with subjects, there was no legal way to challenge people like Chester Southam, who injected people with HeLa to determine if it would cause cancer. (Chapter 17)
2. It was widely believed that full disclosure would scare away willing test subjects and halt scientific progress. (Chapter 17)
3. Their stories are tied to HeLa by themes of abuse, lack of consent, and resilience, extending Skloot’s examination of ethics beyond the realm of medicine and into other social institutions. (Chapter 19)
4. By citing case studies and connecting the stories of HeLa and Henrietta’s children, Skloot implies that cycles of abuse and dehumanization are excused and normalized when benevolent deception and lack of informed consent guide public and private policies. (Various chapters)
CHAPTERS 21-25
Reading Check
1. Adenocarcinoma of the cervix (Chapter 22)
2. Henrietta’s children (Chapter 23)
3. Her picture (Chapter 23)
4. 1996 and 2008 respectively (Chapter 24)
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. Repeated harm, negligence, and dehumanization at the hands of “night doctors” during enslavement and later, by doctors and researchers at Johns Hopkins and other clinics, have led to a widespread distrust for medical establishments, as have stories in the Baltimore community about Johns Hopkins stealing children for science. This distrust has led to such fear of harm that Day and Sonny Lacks hesitate to get a foot amputation and angioplasty, necessary procedures meant to extend their lives. (Chapter 21)
2. Because he pledged funding for a five-year turnaround for a cure, scientists were pressured to act quickly, by whatever means. (Chapter 22)
3. Because of the ease of gathering DNA from tissue, collection risks a breach of privacy to patients and genetic offspring. (Chapter 23)
4. Both continued to show up for routine tests thinking that they were being screened for cancer, and both hesitated to object out of fear that they would be “cut off” if they complained, raising questions about the role of power imbalance and coercion in research participation. (Chapter 25)
CHAPTERS 26-38
Reading Check
1. HPV vaccine (Chapter 27)
2. Care for others (Various; Chapter 30)
3. Oil commodification (Chapter 32)
4. The burden of the cells (Chapter 35)
Short Answer
Answer each question in at least 1 complete sentence. Incorporate details from the text to support your response.
1. Skloot uses Gold’s dismissive tone to exemplify an attitude that research is not a collaboration between humans but a process that privileges the researcher and relegates patients to nameless test subjects. (Chapter 26)
2. Without truth and clear information, Deborah does not have closure and must seek it on her own, which leads to misunderstandings such as her belief that Henrietta herself has been cloned. (Chapter 29)
3. After the visit reveals the reality of gruesome torture and abuse of her sister, Elsie, Deborah’s health deteriorates. Skloot worries about the role of coercion in their relationship and whether she caused Deborah’s mental health crisis. (Chapters 33-35)
4. Science and religion offer answers to the same questions in ways that appeal to the need of different people to explain the unknown. (Chapter 36)
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