2015 Annual Meeting in Seattle

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The Willowbrook Case: The Ethical Choices in Light of the Thought of Agnes Heller

Edna Raquel Hogemann, UNESA/BRAZIL

www.silive.com

The Willowbrook Case

• It promotes a critical reflection about ethical indifference and its implications in contemporary context taking as a basis Agnes Heller`s philosophical thought. It recognizes the effort made by this author aiming to widen Marxian philosophy of praxis and to understand human action in a world continuously affected by technical and scientific knowledge. It assumes a radical understanding of ethics as a reconstruction of human meaning, which reveals a significant tuning with led by Emmanuel Lévinas. It develops such a study focusing the episode that became known in the international scene of the violation of human rights of vulnerable as the Willowbrook case.

The Willowbrook Case

• It explains how this one became paradigmatical, identifying its impacts on the American cultural world: hundreds of poor and handicapped children were infected by the hepatitis B virus in order to serve as guinea pigs for scientific experiments. In the light of the contemporary ethical reflection, it looks for deepening the concept of responsibility and the knowledge of the condition of vulnerability.

The Willowbrook Case• The Willowbrook State School was a boarding school for poor children with mental retardation, located in Staten Island, in New York City.

• The number of inmates from the institution increased from 200 children in 1949 to over 6,000 in 1963. Such growth of residents was not accompanied by a proportional increase in hygiene and quality conditions. So for the first time in 1949, cases of hepatitis have been reported among children, and in 1954 (until 1970), instead of carrying state resources to invest in improving the living conditions of children in Willowbrook, the government allowed Dr. Saul Krugman and his colleagues (pediatricians and researchers) to begin studying the disease in the institution, once it was a highly favorable environment for research.

• Of the 5,200 children of internal Willowbrook who were part of the study, 3,800 suffered from profound retardation, with an IQ below 20. 

• A patient is left to himself in a large room at Willowbrook in 1971, the same year the school was exposed for being overcrowded, understaffed and unresponsive to some horrifying conditions.http://www.silive.com/

specialreports/index.ssf/2011/03/willowbrook_state_school_was_t.html

The held search at Willowbrook State School

• With the goal of developing a vaccine for hepatitis B, doctors in the period 1956-1970 purposefully infected with hepatitis B about 700-800 children mentally retarded. In this case, the researchers asked and received permission from the parents of the children on the grounds that, sooner or later, all children admitted to the institution fatally would be infected the disease.

Justification for the creation of experiment

in children• 1) these children would be inevitably exposed to the disease under natural conditions in the institution,

• 2) the kids would be admitted to a special, well-equipped and trained personnel unit, where they would be isolated from exposure to other infectious diseases prevalent in the institution; so it would lead to their exposure to hepatitis lower risk associated with the type of institutional exposure to multiple infections could be acquired,

• 3) they were vulnerable to have a subclinical infection followed by immunity against hepatitis, and

• 4)were included only children whose parents had given their informed consent.

A detail about the informed consent

• Parents of children at Willowbrook were informed that the institution had only vacancies in the unit of hepatitis for children whose parents allow them to be part of the research of hepatitis. Therefore, this consent cannot be considered valid because of the existent coercion.

• Some parents were eager to commit their children and had no other alternative but to make this decision, as they had no other choice.

A detail about the informed consent

• According to the report, parents were told that the only way your child could be admitted at Willowbrook would submit to the experimental hepatitis. However, the purpose of the experiment was never immunization of children. This was just an expected consequence.

Another detail

• It’s important to stress the role played by the North American scientific community, insofar as the work in question had the approval of the University Committee on Human Experimentation, by the Department of Mental Hygiene of New York and the Epidemiology Committee of the Armed Forces Medical Research and Development Command of the Armed Forces.

The ethical question

• Every human being has the right to be treated with decency; medical science can advance by using new techniques and can contribute to the well-being of people, but this does not justify any medical technique be considered above the patients’ well-being and dignity.

The ethical question

• Every human being has the right to be treated with decency; medical science can advance by using new techniques and can contribute to the well-being of people, but this does not justify any medical technique be considered above the patients’ well-being and dignity.

The issue of ethical choices

• Agnes Heller believes that men develop an individual relationship with the value system of the society to which they refer, and that is what ethics means. So, it is inferred that any ethical choice is an individual choice. In this direction, the author follows some paths diverging from Habermas with regard to the existence of a "moral sphere", since for her there is not an autonomous moral able to establish itself as a particular sphere of contemporary human behavior, for the simple fact that morality can only be observed through the moral practices of people. Such practices would be involved in a number of basic assumptions on which the determination by a moral option may or may not lead to an ethical action, a choice either for good or for evil.

The issue of ethical choices

• There are two concernsin in Heller’s work: with the intent and the result. Having an intention that is guided in certain values is important, but not sufficient. One must recognize the consequences of actions, but, of course, those consequences that are predictable.

The issue of ethical choices

• In the event of research conducted with children in Willowbrook, it is evident that the researchers deliberately used artifices at least unsavory to achieve the intent of his experiments, insofar as the parents were practically coerced into allowing their kids being part of the research of hepatitis. Therefore, this consent is not valid, even if the purpose was the most laudable in terms of advancing scientific knowledge.

The issue of ethical choices

• So, in this case, the experimentation performed on children, even with informed parental consent, is illegal unless it is the child's interest. Especially when one takes into account that the purpose of the experiment was never immunization of children. This was only an expected consequence, and nothing beyond.

The issue of ethical choices

• How then explain the differences that distinct individuals have in relation to ethical choices? A first explanation could be that different environments and social strata are also marked by different value systems.

• Willowbrook doctors would likely not submit their own children or children of your family and friends to the experiments those kids were submitted, however much they were devoted to the advancement of science in the search for a cure for hepatitis.

Dr. Krugman’ s position

• In the light of such ethical thought, Krugman's position should be examined. He goes further in his statement of defense by claiming that the children selected were in an isolated environment, well-tended, being incessantly observed in order to protect them from other infections, and in this way not "contaminate the result."

Dr. Krugman’ s position

• There is in Krugman’s discourse what Sloterdijk (2011) conceptualizes as enlightened false consciousness, which can be summarized in one word: cynicism. For this thinker, we live in a society in which "hardened idealisms" make the lie the way of life, where people are reified by their social status and cease to be an end in themselves to serve as a medium for remote purposes, in a Kantian reference of transverse dignity. This view approaches Heller's reflections about the bourgeois selfishness: this does not take into account even the moral precepts.

Ethical choices

• Heller argues that ethical choices should have as lighthouse good life for all, and that such choices are preventive, proactive and prepositional; thereby, in her view, public happiness is built, since individuals have access to information, discussion and freedom of choice. Only then justice can prevail despite the diversity and unpredictability of practical moral rationality.

Conclusion• However much the intentions due to Dr. Krugman and his team have been guided by values such as the advancement of science, the pursuit of curing a serious disease, this in itself was not enough to justify their actions: vitiating the expression of will autonomy from parents of children in the signing of informed consent, through the impositions and determining conditions, means attempting against the most fundamental of all human rights, namely, the right of life, by submitting children to infection with hepatitis without giving them any chance of defense or protection of their dignity as human beings.