Henrietta Lacks Part 1- The Absence of Informed Consent

Skloot’s The Immortal Life of Henrietta Lacks tells the story of a 31-year-old African American woman who was treated for an aggressive form of cervical cancer in 1951 which she died of a year later. While performing her first radiation treatment, the doctors also took a sample of her cancerous cells which became the first human “immortal cells” known as “HeLa” which were a key part of the advancement of many medical treatments including chemotherapy and the polio vaccine. Skloot begins the book by talking about Henrietta’s childhood and life as a young adult, where she lived in impoverished circumstances and was obviously not able to receive convenient and consistent medical treatment. At the time, Johns Hopkins was one of the only hospitals in the Baltimore area that had a “colored” wing where they would treat black patients.

The morality of the doctor’s treatment of Lacks is heavily scrutinized, as no informed consent was given by Lacks. From a legal standpoint, the doctors received all the consent they needed to perform the cell biopsy, as she did sign a form stating her consent for the doctors to “perform any operative procedures…that they may deem necessary” (Skloot 77). However, she was never informed what exact procedures were going to be performed and why, which goes against all criteria of informed consent. Additionally, she was never told the procedures would make her infertile. Not only is this permanent and important information regarding her procedure, but she also stated she would not have gone through with the procedure if she had known this was a consequence. This is one of the main reasons why informed consent is so important. She lost the ability to do something she loved -having children- which would have been preventable had she received all the information. One might argue that this is besides the point considering she may have died even quicker without the radiation. However, a patient, regardless of the outcome, should have the right to make a decision about their body regardless of the consequences either way.

One quote that really stood out to me was Grey calling himself “the world’s most famous vulture, feeding on human specimens almost constantly” (Skloot 76). I don’t believe that Grey saw anything wrong with getting his samples without consent, especially when he viewed it as a sort of “payment” for treating the patients in the public wards such as the colored ward at Johns Hopkins. This highlights the racial issues within healthcare at the time. Grey may have been willing to treat people of color, but he saw no issue with taking from them personal property such as cells without their consent.

3 thoughts on “Henrietta Lacks Part 1- The Absence of Informed Consent

  1. Katherine Gao

    Cassie does a great job analyzing the overarching ethical consideration of autonomy that was largely disregarded in Henrietta’s situation. Taking a look at Henrietta’s cancer treatment, it’s clear that although she legally consented to treatment by signature, she was never given full disclosure. The consent form’s wording perfectly exemplifies the kind of physician/patient hierarchy assumed at the time — doctors know best and therefore can determine the best route of treatment for their patient without patient input. But, as Cassie points out that Henrietta would not have proceeded with treatment had she known about the risk of infertility, what is “best” is often subjective based on a patient’s own order of values.

    Bringing the medical research performed on Henrietta’s cells into the picture, Cassie points out the stark role racial and socioeconomic differences played in healthcare. Gey’s quote that Cassie cites is especially appalling because the use of the word “vulture” portrays the patients at the John Hopkins’ colored ward not as humans, but as subjects — or as Kant would say, they were treated as a means to an end rather than an end in themselves.

    I think it’s also imperative to consider that even if Henrietta had given proper informed consent for her cells being used for medical research, it would have been hard for her to achieve full autonomy in such a segregated society regardless. Even her so-called “informed consent” would likely have been influenced by fear of being refused treatment at the only medical facility offered to colored people.

  2. Leah Doubert

    Cassie does a great job explaining some of the ethical violations committed by the doctors against Henrietta throughout the first part of the book. The issue of informed consent is a crucial piece of Henrietta’s story. Although she signed a form allowing the doctors to perform any treatments they felt were necessary, she received absolutely no knowledge as to what those treatments could entail. Such a vague consent form is an obvious way to take advantage of patients, especially of those from a demographic like Henrietta’s.
    The issue of informed consent becomes a question of paternalism when Henrietta finds out, after months of receiving radium treatments, that they have rendered her infertile. While the treatment was likely the only chance at saving Henrietta’s life, and she probably wouldn’t have had much time left to have more children if the doctors didn’t attempt to treat her cancer with the radium, doctors can never truly know what the patient views as “best” for their own life. As Cassie explains in her response, that decision always should have been Henrietta’s to make.
    I found Cassie’s point about Dr. Gey really interesting. Considering that he may not have seen what he was doing as “wrong” added a whole new angle to the issue for me. It could be argued from a utilitarian point of view, for example, that harvesting Henrietta’s cells had the potential of helping lots of other people in the future, making it worth a violation of one patient’s autonomy. While I can logically understand how people view this issue in this light, I strongly disagree with it from a moral and ethical standpoint. Henrietta was so much more than some cells, and taking them from her without permission completely dismissed her right to decide what is done to her body.

  3. Muhammad B Mukarram

    Cassie’s analysis of the first 6 chapters of The Immortal Life of Henrietta Lacks is spot on in regards to the line between trusting a physician with one’s medical treatment, and knowing what the treatment consist of. As Cassie mentioned, legally, Henrietta agreed to being treated by the physicians, however, the exact treatment method and associated risks/outcomes were not outline fo rher properly so she did not receive a fair opportunity to weigh her options and decide whether or not she was truly onboard with the plan of action.

    This, as Cassie mentioned, is the entire premise of informed consent. One must be thoroughly educated on what their choices are in order for them to decide to follow through with it or not. The most basic violation of this is that Henrietta was not informed on the fact that the procedure would render her infertile. This is a major issue and no moral doctor should ever neglect to offer such information to a patient because it such a powerful decision for a woman.

    I personally see a racist undertone in this entire situation. It is clear that because Henrietta was African American, her life, lifestyle, and choices were not that important, so explaining the potential risks associated with the treatment was not worth the time of the physicians involved, in fact, she was more like a guinea pig for Dr. Gey, and in 2020, a guninea pig would have likely gotten better treatment. A disgrace to the medical community.


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