The Immortal Life of Henrietta Lacks is a book that went against the topics discussed thus far by demonstrating the racial injustices within healthcare, the lack of patient autonomy, and the lack of informed consent provided to patients. Towards the beginning of the book, the author provides information about the lack of medical care for African-Americans. Still, Johns Hopkins Hospital was one of the few that provided public medical care for them, but it came at a price. Dr. Richard TeLinde would often use patients within these public wards for his research without their knowledge. This goes against the patient’s right to consent and autonomy and is both morally and ethically wrong. It may be beneficial from a utilitarianism standpoint, but looking at its face value, the act in question is wrong.
When Henrietta Lacks went to Johns Hopkins for treatment for her mass, she was handed a form in which, if signed, gives consent to any treatment and anesthesia that the physician deems necessary. This is a problem as it does not provide enough information about the procedures that may be given, and given that Henrietta is not able to read well, informed consent is not given. From a legal perspective, the form that was provided is sufficient, but what lacks is the ability for the patient to understand and give their full autonomy toward the decision of their care. Later in the book, during the surgery to treat the cancerous mass, Dr. Lawrence Wharton Jr. shaved two pieces from Henrietta’s cervix, one of the healthy cervix and one of the cancerous mass. These shaved pieces were later used for cell growth research without Henrietta’s approval.
Lastly, Henrietta, during her continued treatment for her cancer, was then informed that she was infertile due to the first treatment provided. This destroyed her as she loves having kids, and with the lack of critical information that the physicians were required to provide, she was unable to make an informed decision on whether she would go through with the procedure. It was stated that warning patients about fertility loss before a cancer treatment were even standard procedure for Johns Hopkins. Why was she not provided with the same standards as other patients that are treated within Johns Hopkins Hospital? Was it due to the pigment of her skin, or possibly due to the desire of the samples taken that were used for research? Was this for the greater good as it has provided a giant leap for science and medicine?
Justin proves an excellent and very comprehensive review of the issues of patient autonomy and informed consent found in Part 1 of “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. He notes that the idea of researching on patients of public hospitals without their knowledge is fundamentally against autonomy and the right to consent. He directly cites the consent form that Henrietta signs when she enters Hopkins for treatment. I think his distinction between the legalistic nature of consent and actual consent is particularly strong, as this is a perfect example of that dichotomy. The final issue of informed consent that Justin mentions involves the devastating side effect of radiation treatment that Henrietta was not informed of–infertility. He goes further to bring up the question of if Henrietta’s socioeconomic and racial statuses are the cause of these violations, or if the infringements are deeper-rooted.
I think Justin makes really good arguments about the connection between all these violations. However, the argument could be further strengthened by thinking about how many of the philosophical theories that would normally apply may fall apart in this system. For example, many philosophical theories assume there is complete autonomy and free will. Unfortunately, because of the circumstances that Henrietta was born into, she may not ever have complete autonomy, and thus it further complications the infringements mentioned here.