Throughout The Immortal Life of Henrietta Lacks, multiple examples are given of doctors and scientists using their power to coerce consent from patients and research subjects. They have privilege as well-educated doctors or scientists and usually as wealthy, rich, white men. Two large examples caught my attention in part two of the book. Both of these examples came from Chester Southam’s research on whether HeLa cells could cause cancer in those exposed to the cells. His main research subjects consisted of a group of cancer patients and a group of prisoners that willingly volunteered to be a part of the study. Both of these populations clearly held less power and influence than a well-established and respected virologist such as Southam.
In the case of the cancer patients, Southcam lied about the purpose of his injections of HeLa cells and claimed he was “testing their immune system.” These patients, already ill and most likely less educated in the field of cancer research than Southam, were not in a position to question a prominent figure in the medical field when he promised he was trying to help them. The prisoners in the study were clearly in a vulnerable position compared to Southam when they volunteered. As prisoners, their autonomy had already been limited and Southam further relied on the prisoner’s feelings of moral insuperiority to gain consent. Many prisoners cited a need to make amends for their past crimes as their reasons for joining the study.
The examples above show extreme power imbalances between a scientist or doctor and patients or research subjects. However, it does lead me to question at what point we can truly deem a patient or research subject to be in an empowered enough position to truly give consent to physicians or researchers. Most who participate in a study or go to a physician are not as well-educated in the fields of medicine or science as the scientist or doctors they give consent to. There is a focus on educating patients and research subjects enough to guarantee “informed consent.” The complication with this concept is quantifying whether a subject’s or patient’s comprehension of the information they have been given is sufficient. Additionally, in the case of patients, those who seek out treatment from a doctor are typically already ill and must rely on their doctors to receive treatment, making coercion a greater possibility. I question the ability of acquiring valid informed consent in a society where inequalities are so prominent.
In her commentary on part two of The Immortal Life of Henrietta Lacks, Amelia lays out two prominent examples of how the power dynamics at play between privileged researchers/doctors and research subjects/patients serve to undermine consent, particularly informed consent. She explains that cancer patients and prison inmates that Southam performed research with were less educated in the field of medicine and were a part of a vulnerable population. Amelia then proceeds to question at what point patients, including those in her cited examples from the book, actually are deemed to have sufficient informed consent when those who are relaying the information are in a more privileged position. I think that the lack of IRB’s in the time that Henrietta’s story takes place shed light on this problem, because there was no outside entity holding researchers truly accountable for what they told patients they were doing. As a result of patients and doctors or researchers and participants being two separate people, there is always going to be a gap between the two parties conceptual understanding of a procedure or study but oversight by legal entities and IRB’s has helped considerably to lessen the disconnect. For me this idea connects with the problem of distinguishing between doctors and researchers in science and medicine, to which I would ask can there really ever be a clear distinction? Doctors rely on information gained through research, and researchers rely on information about patients treated by doctors to focus their research efforts. Kantian ethics seem necessary to employ in both circumstances, by not treating patients or research subjects as merely means but ends in themselves.
Amelia does a good job at identifying why Southam’s two main classes of study participants — Ohio State Penitentiary inmates and cancer patients — were vulnerable parties and perhaps not fully capable of giving informed consent to the experiments. I found the question of prisoner consent particularly interesting since it raises some issues that we might not have dealt with so far. It’s certainly true, as Amelia says, that the prisoners literally lacked autonomy; many of their day-to-day actions would not have been under their own control. They would also have been used to obeying orders in a very hierarchical context and might have had their decision making affected by this general lack of power.
However, unlike other situations earlier in the book — for example, African American and low income patient participation in Johns Hopkins’s studies — the prisoners were not actually receiving a healthcare benefit in exchange for their waiver of consent and autonomy. Their participation only represented risk. The prisoners interviewed in the book seemed to have been conscious of this risk and willing to undertake it for moral or ethical reasons. Many seem to have felt genuine remorse for past actions and a resulting duty to do something beneficial for society even if it would harm themselves. Skloot tells us that fifteen years later, experimentation on prisoners was strongly curtailed for ethical reasons. There definitely might have been coercion behind the scenes, but if we accept what the patients say on its face, we might have to ask a different ethical question: should we have the right to deny them participation in such a study, perhaps because we ourselves wouldn’t participate or because we feel a certain for the experiments? Isn’t this a sort of paternalism itself? Doesn’t it deny the autonomy of the prisoner to act in the pursuit of his own conception of personal reconciliation or abstract good?