This paper will explain how consent and ethics is crucial and how it has impacted many African American people today. We have seen that medical consent has a dark history that has affected this country for a long time. As far back as the period of slavery, African American people have been discriminated against and have been used for studies with uninformed consent. In the 1940’s, Henrietta Lacks, an African American woman, was treated for her cervical cancer. Doctors at Johns Hopkins Hospital in Baltimore discovered the first immortal cells, which contributed to the making of the polio vaccine.
The case of the Tuskegee Syphilis Study, which began in the 1930’s, and many other cases similar to it, are important in the history of medicine and the African American community because they mark the everlasting discrimination that continues to transpire in America.
This paper will further explain how these horrid events that took place in our history have affected black individuals and how ethics came to be dismissed for the sake of science.
The meaning of consent is to give permission for something to happen or an agreement to do something. In the context of this paper, Ruth Macklin in her article “Understanding Informed Consent”, defines medical consent as, “the provision of adequate information enabling the patient or subject to make an informed choice; the capacity of the individual to understand what he or she is told and to make a reasoned choice based on that information; and the voluntariness with which the choice is made.
” This means that the individual who will undergo such procedures must know what it will consist of and the benefits and potential risk’s that may come if they agree to the study.
A good example of uninformed consent would be the African Americans who blindly took part of the Tuskegee Syphilis Studies that took place in Macon County, Alabama from 1932 until 1972. Four-hundred African American males became subjects in this study without knowing that they were being experimented on. Cheryl B. Leggon in “The Impact of Science and Technology on African Americans”, states that “the subjects were never told that they actually had syphilis but that they had ‘bad blood’.” Even after the cure for syphilis had been developed, doctors withheld information and refused to provide the vaccine for these men; then continued to use them for 40 years. Contemporary America has seen and is experiencing the aftermath of these appalling cases.
After a long history of injustice and mistreatment the African American community has developed distrust of the healthcare system and tend to refuse health care more than any of the ethnic groups in this country. “African Americans’ Opinions about Human Genetics Research”, written by Paul Achter, Roxanne Parrott, and Kami Silk, report, “a higher percentage of African Americans who might consider organ donation perceive the organ-distribution system to be unfair and believe that physicians would be comparatively unlikely to save them if donation went awry.” A reaction such as this is normal; no one would trust a system that is corrupt and filled with deceit. Unfortunately for African Americans, they have been the target of discrimination for a long time and, by the way things continue to look, they might continue to be the target of many more abhorrent events in America.
As humans who have the capacity to think morally and ethically, many questionable actions throughout our history do not seem to express this better nature. Consider the case of Henrietta Lacks. Henrietta Lacks was an African American woman who lived in Turner Station and was diagnosed with cervical cancer in her early thirties. Portions of the HeLa cells (Henrietta Lacks cancerous cells) that accumulated in her body were taken from her and were later revealed to be immortal. They were immortal in the sense that even after being extracted from Henrietta’s body, they continued to develop and grow in number if given the proper nutrients and environment. It could be said that unknowingly Henrietta Lacks has saved multiple lives even after her passing in 1951. A small sample of her cells was enough to help doctors develop the polio vaccine and even helped scientist’s obtain knowledge on the effects of zero gravity on the human body.
Whether the simple nod of her head before her passing was consent or not is still a mystery. Henrietta’s case introduces a crucial question: will your rights to consent to a study be overlooked for the sake of the greater good and science? A scene from Rebecca Skloot’s book The Immortal Life of Henrietta Lacks shows a member of the medical staff thinking about what they had done: “I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman” (91). Skloot continuously mentions that breaches in medical ethics happen due to doctors and scientist dissociating the cells from the individuals from whom they have been taken.
The discovery of something groundbreaking in medical science could be very important for the human population but if it comes at the expense of lives and well-being; would it not be ethically and morally wrong to continue with such studies? According to Skloot’s text, Chester Southam thought otherwise. Chester injected HeLa cells into already ill patients without their consent. He deceived them and took advantage of their trust in him and continued to deteriorate their health further. Skloot’s text states, “He repeated this process with about a dozen other cancer patients. He told them he was testing their immune systems; he said nothing about injecting them with someone else’s malignant cells”. This quote breaks many ethical rules and is a clear example as to how our morals change as we see progression in an area of focus. Ruth Macklin cites another case in which researchers at a Jewish Chronic Disease Hospital in Brooklyn, New York in 1964 conducted their own experiments on patients who did not have the capacity to give consent.
Ruth Macklin’s article “Understanding Informed Consent” states, “researchers injected live cancer cells into elderly hospitalized patients. Some of these patients were suffering from dementia, all were sick, and their capacity to consent was not determined.” This case connects back to the history presented in Skloot’s book at the time. Medical consent was not something that was commonly practiced in the 1950’s and 1960’s. Some may claim that it is not necessary to inform the patients of the procedures they will undergoing. Raanan Gillon in his article “Consent” explores the counterarguments of giving the subject or patient the authority to consent to studies.
He claims, “Patients, they say, are unnecessarily alarmed and their medical state unnecessarily impaired if they have to be given information about their diagnosis or prognosis or risks associated with their proposed management and treatment.” Gillon is referring to those doctors who believe that giving such power of authority to the patient will bring more unwanted problems that doctors could avoid by withholding crucial information. Consent is something that is mutual between two individuals and is the foundation of trust. When conducting studies that could potentially put a patient in danger, trust is the only thing that holds each party accountable. Unfortunately for African Americans, trust is something that is very rare and hard won. We continue to hope that time will mend these scars from our dark American past and that the nation may at last become united.