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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Discussion Topic

The meaning and importance of "informed consent" in The Immortal Life of Henrietta Lacks

Summary:

"Informed consent" in The Immortal Life of Henrietta Lacks refers to the ethical practice of ensuring patients understand and agree to medical procedures or research. Its importance is highlighted by Henrietta Lacks' case, where her cells were taken without her knowledge or permission, raising significant ethical issues about patient rights and the exploitation of individuals in medical research.

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What does "informed consent" mean in chapters 15–17 of The Immortal Life of Henrietta Lacks?

The term "informed consent" means that a subject of healthcare intervention or research gives their permission for treatment based on an understanding of all the relevant factors involved.

This means that the clinician concerned must explain to the patient exactly what is involved in the course of treatment they propose. If, for whatever reason, the patient does not consent to such treatment, then, under the principle of informed consent, it cannot take place.

By the same token, if the patient allows healthcare professionals to go ahead with treatment, but they have not been fully informed about the relevant procedure and what it entails, then we have consent, but not informed consent.

Informed consent is an important principle because it is based upon respect for the autonomy of the individual. Ultimately, it is the patient's body that is affected by treatment, some of which can be quite invasive or involve serious risks and potential side effects. And so it is only right and proper that they are the one who gets to decide what treatment they should undergo. It is the patient's body, and so it is the patient's decision.

If informed consent were not forthcoming, then we'd have a situation whereby medical professionals would be imposing a course of treatment that may not always be in the patient's best interests. Violation of this vital principle of medical ethics calls to mind numerous aberrations from the none-too-distant past, when experiments were carried out on unsuspecting patients, many of them poor or from racial minorities, whose long-term health was damaged as a result.

The notion of informed consent is ably illustrated by the case of Henrietta Lacks. She did not give the medical authorities informed consent to remove her cells. Her family didn't even know about the existence of her cells until twenty years after her death.

Henrietta's cells were removed when she was undergoing treatment for cervical cancer. Doctors believed that these cells could live and grow, thus revolutionizing the treatment of polio and cancer, among other ailments. And though they were right to think this was the case, criticism can still be made of their actions as violating Henrietta's moral autonomy and agency as a human being.

Here we see one of many examples in the medical field in which there is a clash between vitally important goals that raises profound questions of medical ethics.

On one hand, there is the goal of treating serious illness. On the other, there is the goal of protecting the rights of the individual. In the case of Henrietta Lacks, the clinicians concerned chose to pursue the former goal in violation of the latter. In doing so, they may have advanced the cause of medical science, but they did so at the cost of a significant breach of privacy and autonomy.

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

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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