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?
Informed Consent is crucial in the field of medicine and science so that patients or subjects know of the consequences that could arise from a certain procedure or research. Without this framework of consent put in place to allow patients to be autonomous with their decisions, or at least most of their decisions if they are able to make such a decision, the results could be catastrophic.
In the article “The Concept of Informed Consent” by Ruth Faden and Tom Beauchamp, two very clear views of consent were distinguished. These views include autonomous authorization and informed consent as effective consent, or otherwise known as sense1 and sense2 respectively.
Sense1, or autonomous authorization, takes into effect when a patient provides more than an expressed agreement with, or the patient complies, with an arrangement or proposal. The patient would need to actively authorize the professional to move forward with a procedure or research. Sense1 also contains four acts in which the patient is required to follow. These acts include; (1) Substantial understanding (2) Substantial absence of control by others (3) Intentional compliance (4) authorization of a professional. Without the complete actions of one through four, the consent becomes obsolete and is no longer under the branch of informed consent. A patient may abide by the first three steps, but without the fourth, the consent no longer follows such rules set by autonomous authorization and that is what distinguishes informed consent as a kind of autonomous action.
Sense2, or informed consent as effective consent, stated as a “…policy-oriented sense whose conditions are not derivable solely from analysis of autonomy and authorization…” (Faden and Beauchamp). This sense is based on a legally or institutionally effective authorization, and it focuses on regulating the behavior of the professional and it also establishes rules and procedures for the consent of the patient or subject.
Lastly, the article mentions shared decisionmaking between the professional and the patient, and this form of decisionmaking is unethical. This form is unethical due to the manipulative properties and may distort the patient’s views and decisions causing them to possibly make a decision that was unintentional in the first place. Without the framework of informed consent from both senses, the medical and scientific field would be filled with unethical, and morally questionable, practices, completely demolishing the patient or subject and professional relationship.