portrait of Henrietta Lacks with lines building on her image to a grid of connected dots

The Immortal Life of Henrietta Lacks

by Rebecca Skloot

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In The Immortal Life of Henrietta Lacks, what does "informed consent" mean and why is it important?

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In research, “informed consent” refers to the process of getting permission before conducting a procedure. The word “informed” is particularly important here. Researchers need to make sure that the patients or people giving them permission have a complete understanding of what a particular procedure actually entails. In other words, these people need to be informed of all of the implications.

Today, healthcare workers are required to ask for informed consent. However, up until the 1970s, they did not have to do this. In The Immortal Life of Henrietta Lacks, Rebecca Skloot tells the story of Henrietta Lacks’s family and how they did not completely understand what the healthcare industry did with Henrietta’s cells. When Henrietta was in the hospital for cervical cancer, healthcare workers removed cells from her cervix without her permission. They found that they were the first immortal line of cells in history. When Henrietta died, her doctor requested an autopsy to obtain samples. He told Henrietta’s family that the autopsy would help his family if anyone else got cancer. He did not tell them anything else about Henrietta’s cells or what the implications of the cell signature meant. Today this is seen as extremely unethical.

When addressing this question, one could argue that it is important to have informed consent out of respect for the patient’s life and the patient’s family members. For instance, a reader could point to Southam’s unethical experiment in chapter 17, in which Southam injected patients with cancer cells without telling them.

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