The Immortal Life of Henrietta Lacks: Bioethics and Study Guide Vocabulary

Vocabulary and key conceptual terms covering ethical frameworks, central figures, and narrative themes in Rebecca Skloot's The Immortal Life of Henrietta Lacks.

Informed Consent

An ethical process in which an individual makes a voluntary decision based on an adequate understanding of relevant information, extending beyond a signature on a one-time form.

Competency

A dimension of informed consent referring to a person's relevant decision-making capacity, which is distinct from their age, educational attainment, or agreement with a clinician.

Comprehension

A dimension of informed consent requiring that a patient or research participant is able to understand relevant information in a usable and accessible form.

Disclosure

A dimension of informed consent in which relevant information—including the purpose, risks, benefits, alternatives, and reasonably foreseeable uses—is communicated to the patient or participant.

Voluntariness

A dimension of informed consent specifying that a decision is made freely without undue pressure, manipulation, or improper institutional influence.

Paternalism

A practice wherein an authority figure restricts an individual's choices or information access under the claim that doing so is in that individual's best interest.

Autonomy

The capacity and right of an individual to participate meaningfully in decisions concerning their own life, body, and medical care.

Benevolent Deception

The act of withholding or distorting information with the stated intention of shielding an individual from emotional harm or distress.

Common Good

Benefits and resources that support the overall health, welfare, and well-being of a community or society.

Structural Racism

Institutional policies and societal arrangements that generate unequal power, treatment, or opportunities across racial groups, even in the absence of explicit individual prejudice.

Stakeholders

Individuals or groups who are directly affected by an outcome or decision, or who possess the authority to influence it.

HeLa Cells

The continuous, immortal cell line derived from Henrietta Lacks's cervical cancer biopsy that grew unprecedentedly well in vitro and became foundational to global biomedical research.

"The HeLa Bomb"

The scientific crisis triggered by the revelation that HeLa cells had cross-contaminated numerous other cell cultures, compromising existing research and prompting genetic investigations of the Lacks family.

"Night Doctors"

Figures from African American folklore and historical memory reflecting deep-seated fears of medical exploitation, nonconsensual experimentation, and grave-robbing.

Helen Lane

A widely circulated pseudonym or inaccurate attribution used in scientific publications and media that obscured Henrietta Lacks's real identity from the public.

Henrietta Lacks

A Black mother and patient at Johns Hopkins whose cervical cancer cells were sampled in 1951 without her knowledge and developed into the HeLa cell line.

Deborah Lacks

Henrietta and Day Lacks's daughter whose pursuit of knowledge regarding her mother's cells and her sister Elsie's medical fate forms the emotional center of the book.

Elsie Lacks

Henrietta and Day Lacks's daughter with developmental disabilities who was institutionalized at the Hospital for the Negro Insane and died under poorly documented conditions.

George Gey

The head of tissue culture research at Johns Hopkins whose laboratory first successfully cultivated and distributed Henrietta Lacks's cells as HeLa.

Mary Kubicek

The laboratory assistant to George Gey who processed Henrietta Lacks's tissue biopsy and first observed the cells dividing and growing persistently.

Dr. Richard TeLinde

The Johns Hopkins gynecologist whose research comparing noninvasive and invasive cervical carcinomas provided the clinical framework under which Henrietta's tissue was collected.

Dr. Chester Southam

A cancer researcher who conducted experiments injecting uninformed patients with malignant HeLa cells to evaluate immune reactions, exemplifying nonconsensual clinical testing.

Christoph Lengauer

A Johns Hopkins researcher who invited Deborah and Zakaiyya Lacks into his laboratory to view HeLa cells under a microscope and answered their questions respectfully.

John Moore

A leukemia patient whose excised spleen cells were developed into a lucrative cell line by his physician, sparking a landmark legal dispute over bodily property rights.

Ted Slavin

A hemophiliac whose high-titer hepatitis B antibodies held major commercial value and who actively managed, licensed, and sold his own biological samples for research.

Bobbette Lacks

Lawrence Lacks's wife who first learned from a chance conversation that Henrietta's cells were alive in laboratories and acted to protect family members from medical overreach.