Review of The Immortal Life of Henrietta Lacks Flashcards
Historical Context and the Medical Diagnosis of Henrietta Lacks
The Initial Symptom and Diagnosis
Date of Observation: Henrietta Lacks first visited the Johns Hopkins charity hospital on January 29, 1951.
Patient Description: Henrietta, a spirited young mother of five, reported feeling a "knot" inside her that "hurt somethin’ awful."
Diagnosis: She was diagnosed with a virulent form of cervical cancer.
Treatment: In accordance with medical practices of the time, she was treated with radiation using radium-filled tubes.
Date of Death: Henrietta Lacks died on October 4, 1951, eight months after her initial diagnosis.
Unauthorized Tissue Collection
During her treatment, the attending physician took two small tissue samples without the knowledge or consent of Henrietta or her family.
The samples included one from the malignant tumor and one from her healthy cervix.
The Scientific Phenomenon of HeLa Cells
The Breakthrough in Cell Culture
Before Henrietta’s cells, scientists had spent decades unsuccessfully attempting to keep human cells alive in culture.
Henrietta’s tumor cells were an exception; Rebecca Skloot describes them as "growing with mythological intensity."
HeLa Nomenclature: The cell line was named "HeLa," derived from the first two letters of Henrietta and Lacks.
Immortality: These cells became the first immortal human cell line, meaning they constantly reproduce in a laboratory setting.
Contributions to Modern Medicine
HeLa cells facilitated the development of the polio vaccine.
They have been critical in research regarding cancer-causing and cancer-suppressing genes.
They played roles in the development of chemotherapy, cloning, gene mapping, and in vitro fertilization (IVF).
They assisted in developing treatments for leukemia, influenza, hemophilia, and Parkinson’s disease.
The Immensity of HeLa Growth
There are currently trillions more HeLa cells in existence in laboratories than were ever present in Henrietta’s body.
If all HeLa cells ever grown were laid end-to-end, they would wrap around the Earth at least times.
Scientific and Spiritual Intersection: The cells were launched into space and used for testing the effects of the atomic bomb. Henrietta’s daughter, Deborah Lacks, viewed the cells as a vessel for her mother’s spirit. Skloot describes the cells under a microscope as "glowing green and moving like water… precisely like heavenly bodies might look."
Bioethics and Health as a Human Right
Origins of the Movement
American bioethics and international human rights emerged following World War II and the Holocaust (the "Nuremberg" era).
Universal Declaration of Human Rights: Adopted by the United Nations on December 10, 1948—three years before Henrietta’s death.
The Failure of Informed Consent
The central canon of bioethics is informed consent: empowering patients and research participants.
Henrietta’s cells were cultured without permission. Her family remained unaware of the existence of the cells for years after her death, discovering them only by chance.
Deborah Lacks attempted to contact scientists at Johns Hopkins to understand the situation, but her inquiries were ignored ("Ask, and no one answers me").
Legal Consistency and Disparity
It remains legal to retain and store tissues taken for biopsy (as opposed to specific research purposes) without patient permission.
While informed consent protections have improved, the implementation of the "right to health" remains difficult.
United Nations Mandates
Article 25 (Universal Declaration of Human Rights): States that "Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care…"
Article 14 (Universal Declaration of Bioethics and Human Rights, 2005): Restates that the highest attainable standard of health is a fundamental human right.
Article 15 (2005): States that benefits from scientific research should be shared with society as a whole.
The Economic Disparity and Commodity of Medicine
Profit vs. Contribution
George Gey, the scientist who first cultured HeLa, shared the cells with researchers globally at no charge.
There is no record of Johns Hopkins accepting money for the cells initially.
Industry Scale: HeLa helped launch a multimillion-dollar industry. Commercial HeLa products currently cost between and nearly per vial.
The Family’s Situation: Henrietta’s descendants have famously struggled to afford health insurance and medical care, despite their mother's cells driving massive pharmaceutical profits.
The Commodity Model
Paul Farmer and his colleagues argue that a major flaw in medical care is that services are sold as a commodity, available only to those who can afford them.
Edmund Pellegrino argues that health care cannot be treated as a typical free-market commodity because healing is a special human activity governed by an ethic that should serve patients rather than investors.
Social Context: The Personal and Social Story of Health
The Concept of Dual Stories
Jonathan Mann (World Health Organization) argued that health has two stories: a personal story and a social story.
The social context often determines who gets ill, what they get ill with, and if they die early.
Henrietta’s Social Context
Born in 1920 in Roanoke, Virginia; her mother died in childbirth when Henrietta was years old.
Raised on tobacco farms in Clover, Virginia, where her ancestors were enslaved.
Left school after the sixth grade.
Migrated to Baltimore as part of a wave of black families seeking work in steel mills during the War, where workers breathed in toxic coal dust and asbestos.
Johns Hopkins was the only major hospital in the area that treated black patients.
Generational Impact and Health
Deborah Lacks died of a heart attack at age , having suffered from high blood pressure, diabetes, and two strokes.
The first descendant to attend graduate school was Erika, Henrietta’s great-granddaughter, who entered a master’s program at the University of Maryland shortly before Deborah’s death.
The Meritocracy Myth and Psychological Obstacles
Definiton of the Myth: The belief that economic outcomes are based solely on merit and "grit," ignoring non-merit barriers to mobility.
Implications of "Bootstraps" Ideology:
Overestimating personal industry leads to the belief that those who are less successful are less deserving.
This excludes the realization that many individuals lack the "boots" (resources) to pull themselves up.
Example Case: A health-care rally in Columbus, Ohio, where protestors verbally abused a man with Parkinson's disease, telling him he was "looking for a handout" while throwing dollar bills at him.
Neuroscience, SES, and Epigenetics
The Gene-Environment Dance
Carey and Gottesman (2006) describe the relationship between nature and nurture as a "life-long dance" where the lead changes from moment to moment.
Epigenetics: Early life events can effectively "reprogram" genes, changing how they express themselves.
Socioeconomic Status (SES) and Brain Development
Low SES is associated with worse health, diminished psychological well-being, and impaired cognitive development.
Neural Mechanisms: Research suggests the broader social/economic context influences prenatal environments and parental care, which in turn affects the neural systems regulating cognition through epigenetic regulation.
Stress Recalibration: Early life adversity can recalibrate stress response systems, increasing the likelihood of exposure to trauma in adulthood and the risk of developing PTSD.
Policy Implications
Understanding the biological mechanisms of disparities challenges the simplistic notion of personal responsibility.
Providing scientific evidence of these neural effects may help mitigate attitudinal obstacles to social and economic policies that address inequities.
The ultimate goal is to reconcile personal responsibility with a nuanced understanding of behavioral forces to achieve the goal of the highest attainable standard of health for all.