In considering the articles we read this week, it is my opinion that the single most important ethical dilemma raised was a violation of autonomy caused by either a lack of informed consent or in the case of the Willowbrook hepatitis studies, consent that was obtained through somewhat questionable practices. The Tuskegee Syphilis subjects were not informed at all that they would be denied treatment, in fact, they were implicitly lied to by the leaders of their community and lead to believe that they were going to get free medical care, blood tests and examinations. (Munson & Lague, 2008)
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In the case of Willowbrook, the research subjects were both mentally incapable of consent and below the age of consent, so the researchers appealed to the parents of the children. While they were initially informed of the nature of the experiment and given time to consider and consult with psychiatrists and their own physicians during the latter part of the experiment, when admissions were restricted because of overcrowding, parents were told the only way they could get their child into Willowbrook was by admitting their child into the Hepatitis Research Unit and the study. Parents were led to believe that the research would lead to better health and better care for their children because they would be isolated from other endemic illnesses at Willowbrook and gain protection against Hepatitis itself. (Munson & Lague, 2008) Without all of the necessary information and available options, participants and their proxies could not give informed consent, therefore their autonomy was violated. In consideration of this, neither study should have been conducted even though there were good things that came out of the Willowbrook study.
In both research projects, harm was caused to both sets of participants however, only one deliberately withheld available effective treatment. Krugman intentionally infected children with hepatitis and justified this action by saying that they wouldve gotten it anyway because almost everyone at Willowbrook gets it eventually. (Munson & Lague, 2008) As it turned out, infecting the children with hepatitis did in fact protect them to some degree. In the Tuskegee study, not only were the subjects lied to and not treated, the whole intent of the project was not to find a cure, but to find out if syphilis affected black people the same way as it did white people. (Munson & Lague, 2008)
The Tuskegee study was a catalyst for the passage of the 1974 National Research Act. It changed the way research using human subjects with federal funding would be carried out by requiring that Institutional Review Boards be created to oversee ethical applications. It also required written informed consent allowing the use of a persons cells and tissues for research, laid out parameters that determine if a project is legitimate from an ethical standpoint and it distinguished research from practice. These parameters were respect for persons, beneficence and justice. (Munson & Lague, 2008) The Tuskegee experiments did not take all of these parameters into account. Participants were chosen specifically because of their race and they were poor and easily enticed to participate by offers of free care and treatment.
In 1986, Saul Krugman explained in further detail about the ethical concerns of the Willowbrook experiment in an article titled The Willowbrook Hepatitis Studies Revisited: Ethical Aspects. He brought up several issues that I did not learn from our textbook. When Willowbrook was initially returned back to the NYS Office of Mental Hygiene after World War II, the initial residents to move in were transferred from Wassaic School and Letchworth Village, two other state schools for developmentally and physically disabled children that were also suffering from severe overcrowding and endemic diseases. (Krugman, 1986) The hepatitis strain prevalent in Willowbrook was able to be traced back to Wassaic. The majority of the children were severely mentally retarded and not toilet trained; this combined with overcrowding, offered little to no control over the spread of disease, including hepatitis. At one point, a letter had been sent to 5000 parents in an attempt to have parents bring their child home instead of leaving them in Willowbrook, which resulted in 2 children going home. This was one of several failed attempts to ease overcrowding and control the spread of hepatitis.
Krugmans study procedures included a one year long epidemiological survey, physical examinations and collection of serum specimens which were kept in a freezer. (Krugman, 1986) Normally the samples wouldve been discarded however, it would be almost 2 decades before the researchers realized the significance of this action. Enough evidence was produced in the survey to believe that admission to Willowbrook equated to eventual infection with hepatitis A. (Krugman, 1986)
After the survey, it was decided to purposely infect children in the hopes of learning to control the incidence of hepatitis, provide some immunity to the children and ultimately develop a vaccine. In regard to obtaining parental consent, as we know from the weeks readings, initially all information about the study was disseminated to individual parents of the children but later the researchers adopted a group method which Krugman stated had a better response. Parents first met with a social worker who explained the project in detail and if they agreed, the parents came to a group session where they met Dr. Giles, nursing staff, attendants and the psychiatric social workers and other physicians interested in the project. (Krugman, 1986) The purpose of the group meetings was to explain in detail the benefits, hazards, and a question and answer period followed by a tour of the facility. (Krugman, 1986) A follow up contact was made a few weeks after the meeting and if parents consented, their child was enrolled.
He pointed out that both the guidelines they used in their study and their methods for obtaining informed consent were similar to guidelines established years after the study began. I noticed in Krugmans article, he did not make mention of telling parents that the only way to have their child admitted to Willowbrook after new admissions were halted was to admit them into the Hepatitis Research Unit and enroll them into the study. If this truly happened, then it could be argued that the parents were victims of subtle coercion.
An unintended discovery from the Willowbrook study was that there were actually 2 strains of hepatitis prevalent in the school; MS-1, (hepatitis A), and MS-2 (hepatitis B). Krugman retested serum samples that had been frozen during the epidemiological study after the Australia antigen was discovered in 1969 and was able to confirm evidence of exposure to both strains. The recommendation from the Commission on Viral Infections of the Armed Forces Epidemiological Board that the studies be continued was based on this information. (Krugman, 1986)
Krugman maintained that the sole reason for conducting their studies at Willowbrook was because hepatitis was prevalent there and the motive was to protect the children and learn about the disease. Knowledge gained because of the Willowbrook studies ultimately had a positive effect for a large portion of society. Along with learning that there are 2 strains of hepatitis, researchers learned how it was spread and that immune globulin can prevent Hepatitis B. In addition, research showed that a 1:10 mixture of boiled MS-2 serum in distilled water provided some degree of protection against Hepatitis B. (Krugman, 1986) Knowledge gained also eventually led to development of inactivated vaccines from the plasma of patients known to be carriers of hepatitis B.
When Ethical Dilemmas During Research Happen. (2019, May 18).
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