Part 1 Locks

Part 1 of the book touches on many of the major bioethical themes that we’ve discussed so far, including patient autonomy, informed consent, and equity in access. One initially striking thing is the way that Johns Hopkins seemed to offer unusual equity in access to health care for poor and African American patients. “Hopkins was the only major hospital for miles that treated black patients”; even though it was one of the top hospitals in the country, “its public wards…were filled with patients, most of them black and unable to pay their medical bills” (15). Skloot points to Hopkins’ historical origins as a charity hospital for the sick and poor; it certainly seems to have offered medical care that — according to the expectations of the time and the values of the medical profession — offered something like a real commitment to distributive justice. 

However, as we move through the reading, we see another reason why broad access to care might have been provided at Hopkins. In exchange for treatment, patients were essentially expected to forfeit their patient autonomy and right to informed consent. It seemed to be an operating assumption at the hospital “that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (30).

Herietta’s case exemplifies this. First of all, the “operating permit” that she signed before her treatment would not qualify as informed consent under Canterbury vs. Spence or any other test. This was a generic waiver for all procedures that the doctors might decide on at any point in the future; she would have no knowledge of and no role in deciding specific interventions (31). In addition, she was apparently not informed that the result of her treatment would be infertility (46). Even though information about hysterectomies was supposed to be provided at the time, it seems that black patients were often just not told. Their agreement was not considered necessary, an especially extreme form of paternalism (“benevolent deception”). Henrietta also had no knowledge that her cervical tissue would be cultivated and used in experiments by doctor Gey. Autonomy over her own tissue and how it  might be used was not recognized. 

Also, Henrietta was denied ownership over and financial stake in her physical and genetic material, which has since been used in countless experiments and to make countless people wealthy. In the book, Henrietta’s family seems angry both that she never received recognition and that there was no effort to remunerate her family for the financial gains from her tissue. As Henrietta’s story becomes more widespread, it’s interesting to think how it might affect decisions about how people are paid for their contributions to medical experiments and the results of those experiments. Could we one day patent our own DNA or tissue and hold a certain ownership over it for the purposes of research and resultant products and procedures?

2 thoughts on “Part 1 Locks

  1. Jake Meyer

    In his reflection on the first part of The Immortal Life of Henrietta Lacks, Harrison reflects and touches on multiple important bioethical themes. Firstly, he focuses on the book’s exemplification of ‘distributive justice’ via the public good done by Johns Hopkins Hospital. Harrison argues that the hospital providing treatment to black and poor patients at the time is an example of this justice. I agree that this is certainly a step forward in healthcare justice, especially at the time, yet I question whether the lens of distributive justice can be applied here. Since distributive justice concerns the WAY in which equal distribution of resources is done (e.g is it fair?) rather than the resource itself, I don’t believe this example fits the definition. This is because the doctors seem to be motivated to provide this service so that they can secretly experiment and operate on black patients with absolutely no informed consent. This does not seem like a ‘fair’ distribution of healthcare. Secondly, Harrison reflects on the role of informed consent in the book. I agree with all of his points in this section: he identifies the extreme paternalism practiced by the Hopkins doctors, the lack of informed- if any-consent, and discusses it in the case-specific lens of Lacks. Finally, Harrison focuses on the financial aspect of the case. He discerns that Lacks and her family had a right to the HeLa cells, and that they should be socially and financially reimbursed from the countless scientific developments that stemmed from them. I agree with this dissertation. Harrison proposes an interesting question to the scientific community regarding the “patenting” and ownership of our own cells in research. As healthcare and the economy continue to grow closer to each other, Harrison’s question is more present now than ever before.

  2. Logan D'Amore

    Harrison does a great job laying out three essential moral values, and or themes, that Henrietta’s story revolves around: equity in access, autonomy, and informed consent. He discusses equity in access by directly observing Johns Hopkins Hospital. He states that even though, in the beginning of the novel, Johns Hopkins may have a real commitment to distributive justice in their healthcare to the sick and poor, patients must sacrifice their autonomy and right to informed consent. It is a powerful statement and argument that was well thought out by Harrison, making a crucial connection to further investigate moral ethics in Henrietta’s plot. He then discusses the multiple instances in which Henrietta’s autonomy and informed consent were violated, such as: signing a “generic” wavier, not informed of infertility after her procedure, not informed of her cervical tissue being cultivated by Gey, and the extreme forms of paternalism that has taken place by the doctors. In order to enhance Harrison’s argument, it might have been helpful to mention that Henrietta was nearly illiterate when signing her operating permit (an issue that truly shows she did not know what she was signing). Lastly, Harrison brings up a vital point I never thought about while reading: what about Henrietta’s and Henrietta’s family ownership and financial stake in her own genetic material? It brings up a key observation that may not only be against legal right standards now a days, but a violation of her and her family’s moral judgment and reasoning (as she and her family are not given the opportunity). As technology has enhanced in our society, ownership of our own genetic material may be on the horizon.


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