Themes: Medical Ethics
Medical ethics is one of the central themes of The Immortal Life of Henrietta Lacks. In the 1950s, when Henrietta was diagnosed with cancer, doctors and medical researchers were not required to obtain informed consent from their patients or subjects. Henrietta Lacks was never informed that her cells were harvested, and for many years her family was not informed, either, leaving them in the dark about her contribution to science. Rebecca Skloot traces the evolution of medical ethics in her book, describing how the field has changed since the 1950s. Several public scandals caused a shift in public opinion about medical research. One such scandal was that surrounding the work of Chester Southam, who injected cancer cells into subjects to test his hypothesis that researchers could get cancer from working with HeLa cells. When three Jewish doctors resigned in protest to Southam's study, comparing his methods to those of Nazis conducting experiments on Jews in the concentration camps, the media heard the story and forced the entire medical profession to take notice. The National Institute of Health issued a set of regulations stating that all doctors, scientists, and researchers are required to obtain informed consent from their patients or subjects before conducting experiments or collecting tissue samples. This decision was too late to help the Lackses, however, and did not apply retroactively. The Lackses were not informed of any medical breakthroughs or new developments thanks to HeLa cells, nor did they know when their personal medical information was published (without their names) in a medical journal. In fact, when one of the researchers came to draw blood from the Lackses, the family was so confused about what was happening that they erroneously thought they were being tested for cancer; they awaited the results to no avail. Only now, decades later, are the Lackses informed about HeLa. The medical profession had to completely rethink its ethics in order for that to happen.
Expert Q&A
Where does the following quote appear in The Immortal Life of Henrietta Lacks, and what is its significance?
“She's the most important person in the world and her family living in poverty. If our mother is so important to science, why can't we get health insurance?”
The quote appears on page 168 of The Immortal Life of Henrietta Lacks and is spoken by Henrietta's son, Lawrence. Its significance lies in highlighting the irony and injustice of Henrietta's immense contribution to science through her HeLa cells, which led to major medical breakthroughs, while her family remained in poverty without health insurance. It underscores issues of consent, racial inequality, and disparities in healthcare.
Did Henrietta, as per her signed consent form, authorize her medical procedure? What rights should her family have now, and why?
Henrietta Lacks signed a consent form for medical treatment, but it did not explicitly authorize the use of her cells for research. Her tissues were used without explicit consent, reflecting the era's ethical norms, which lacked stringent informed consent requirements. Her family now argues for rights to her cells, supported by ethical advancements like the Belmont Report. Legal precedents, such as Moore v. Regents of the University of California, complicate ownership claims, but the Lacks family has pursued legal action for recognition and control.
What is the paradox of benevolent deception in "The Immortal Life of Henrietta Lacks"?
The paradox of benevolent deception in "The Immortal Life of Henrietta Lacks" lies in its contradictory nature—while intended to protect patients, it often denies them essential truths and agency. In the 1950s, doctors withheld diagnoses to avoid distress, as seen with Henrietta Lacks, whose doctors didn't inform her about her terminal cancer. This approach, meant to be compassionate, ultimately deprived her of making informed decisions about her treatment, highlighting the paradoxical harm in "benevolent" deception.
How did Henrietta's daughter feel and react to her mother's cells being used?
Henrietta's daughter, Deborah Lacks, felt a deep sense of shock and betrayal upon learning that her mother's cells were used without consent. She described feeling her mother had been "robbed" and was disturbed by the lack of transparency from Johns Hopkins. Deborah's anger persisted over the years, as she felt her family had been denied recognition and compensation. Despite this, she eventually collaborated with Rebecca Skloot to learn more about her mother and her legacy.
What does "a miserable specimen" reveal about doctors' attitudes towards Henrietta Lacks?
The phrase "a miserable specimen" reflects doctors' unsympathetic and clinical attitudes towards Henrietta Lacks, focusing on her illness rather than her humanity. This term highlights the dual nature of her treatment: as a patient suffering from cancer and as a specimen whose cells were invaluable to science. The doctors' insensitivity and racial bias are evident as they dismissed her concerns and exploited her cells without consent, viewing her more as a resource than a person.
What could be the significance of Henrietta's cells becoming immortal, for both Henrietta and the doctors?
“’Your cells will make you immortal.’ He told Henrietta her cells would help save the lives of countless people, and she smiled. She told him she was glad her pain would come to some good for someone” (Skloot 66).
The immortality of Henrietta's cells signifies both a personal and scientific milestone. For Henrietta, it offered a form of solace amidst her suffering, knowing her cells could potentially save lives, as indicated by her smile and remark about her pain benefiting others. For the doctors, her cells, known as HeLa, became invaluable for medical research. However, ethical issues arise as her cells were taken without consent, and her family did not benefit financially or receive acknowledgment.
Should Henrietta Lacks's family have received financial compensation?
In The Immortal Life of Henrietta Lacks, Skloot discusses the Lacks family's violated privacy. How has the right to privacy evolved and been challenged, particularly for marginalized groups?
Did TeLinde and Guy have the right to use a sample from Henrietta's cervix for research?
Why might George Gey have agreed to share the cells with any scientist who asked? Was this a good idea?
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