The Immortal Life of Henrietta Lacks

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

“The Nuremberg Code”

• 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

The Woman They Could Not Silence: One Woman, Her Incredible Fight for Freedom, and the Men Who Tried to Make Her Disappear by Kate Moore

• 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