Henrietta Lacks Informed Consent

Henrietta Lacks was nervous: her thoughts, marred by the pain of cancer spreading inside her, raced as she waited in the dimly lit, colored-only section of John Hopkins Hospital. Moments later, as Henrietta laid unconscious on the operating table, Dr. Wharton picked up a small sharp scalpel and carefully extracted tissues from the wall of her cervix. Afterwards, without notifying her of the extraction or obtaining permission, Wharton sent Henrietta’s cells to medical researcher George Gey for experimentation. Since then, these cells—commonly referred to as “HeLa”—have revolutionized medicine, contributing to numerous scientific discoveries and saving millions of lives. Roughly three decades after Henrietta’s death, the Lacks family received

In the context of medical research, informed consent provides individuals with the opportunity to accept or decline involvement in research, and thereby adheres to their right to choose. Obtaining consent from donors is not limited to simply seeking permission, but involves explaining the nature and consequences of research in an honest and understandable manner. When this aspect of informed consent is ignored, unethical research ensues. For example, during the infamous Tuskegee Syphilis Experiments, US Public Health researchers studied the progression of syphilis in African American men, under the false pretense of curing their “bad blood”. Though a treatment of penicillin was available at the time, researchers idly observed as subjects died painful, preventable deaths. In this case, the informed consent of the subjects was not fully attained as researchers used misinformation to encourage participation in otherwise detrimental studies. In The Immortal Life of Henrietta Lacks, author Rebecca Skloot references a similar case in which a researcher named Chester Southam injected prisoners with cancer cells. Like researchers in the Tuskegee experiments, Southam did not thoroughly explain his research “[as] patients might have refused to participate in his study if they’d known what he was injecting” (Skloot 13). In addition to promoting ethical research, informed consent strengthens the trust between researchers and donors. When researchers seek permission before experimenting on biospecimen, they remain trustable figures to donors. As Rebecca Skloot notes in the article Your Cells Their Research Your Permission, donors would much rather grant permission for research than face “the shock of learning they [are] part of research, debates over who [controls] samples [and] questions over profits” (Skloot 3). Informed consent acts as a bridge urging the voluntary involvement of