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Exploring the Rights of Human Subjects by Eugene Provenzo, Ph.D. Overview Setting the Stage: Questions to Think About...... Are people who are developmentally challenged capable of making an informed decision on whether or not they should participate, as a human subject, in a scientific experiment? If the potential benefits are significant, for science and humanity, should an individual (who is either normal or developmentally challenged) be encouraged to participate in a scientific experiment which puts them at risk? What are the responsibilities that a researcher has for an experimental subject after an experiment is finished, particularly if the experiment proves to be a failure? If a family member (or surrogate) does not have much direct involvement with a developmentally challenged person, who is being asked to participate in a scientific experiment, should they have the right to decide, pro or con, whether the individual participates in the experiment? In Flowers for Algernon the main character, Charlie, falls in love with his teacher, Miss Kincaid. He does so after his intelligence begins to increase. Is it appropriate for his teacher to return his affection, as she does in the novel? Flowers for Algernon is a classic novel by Daniel Keyes that is based on an earlier short story of the same title. It is widely taught at the 9th and 10th grade level in schools across the United States. The novel tells the story of Charlie Gordon, a 32-year-old man with an I.Q. of 68 who is put through an experiment by scientists seeking to boost his intelligence. The story is told from Charlie's perspective in a personal journal that he keeps for the scientists. Charlie's recovery from the operation is gradual, but eventually his intelligence increases threefold. Intelligence Quotient (IQ) is the ratio of an individual's mental age to chronological age. Mental age is determined by tests of higher mental ability. An IQ between 90 and 100 is considered average and over 120 superior. People scoring below 70 are thought to have mental retardation which affects their ability to take care of themselves (dressing, bathing, toileting); their communication skills (understanding what is being said and being able to answer); and their social skills (with peers and adults). Daniel Keyes does a masterful job of showing Charlie's evolution into an increasingly intelligent and perceptive individual, literally becoming smarter and more articulate as we read along in the text. Tragically, the effect of the treatment is only temporary. Over the long haul, Charlie's intelligence declines, compared to what his IQ was before the experiment. This curricular module uses Keyes's novel to focus on ethical issues involving the rights of human subjects-in particular, issues involving the use of subjects who are developmentally challenged or highly vulnerable, such as prisoners, children and people with mental retardation.

Exploring the Rights of Human Subjects

by Eugene Provenzo, Ph.D.

Overview

Setting the Stage: Questions to Think About......

Are people who are developmentally challenged capable of making an informed decision on whether or not they should participate, as a human subject, in a scientific experiment?

If the potential benefits are significant, for science and humanity, should an individual (who is either normal or developmentally challenged) be encouraged to participate in a scientific experiment which puts them at risk?

What are the responsibilities that a researcher has for an experimental subject after an experiment is finished, particularly if the experiment proves to be a failure?

If a family member (or surrogate) does not have much direct involvement with a developmentally challenged person, who is being asked to participate in a scientific experiment, should they have the right to decide, pro or con, whether the individual participates in the experiment?

In Flowers for Algernon the main character, Charlie, falls in love with his teacher, Miss Kincaid. He does so after his intelligence begins to increase. Is it appropriate for his teacher to return his affection, as she does in the novel?

Flowers for Algernon is a classic novel by Daniel Keyes that is based on an earlier short story of the same title. It is widely taught at the 9th and 10th grade level in schools across the United States. The novel tells the story of Charlie Gordon, a 32-year-old man with an I.Q. of 68 who is put through an experiment by scientists seeking to boost his intelligence. The story is told from Charlie's perspective in a personal journal that he keeps for the scientists. Charlie's recovery from the operation is gradual, but eventually his intelligence increases threefold.

Intelligence Quotient (IQ) is the ratio of an individual's mental age to chronological age. Mental age is determined by tests of higher mental ability. An IQ between 90 and 100 is considered average and over 120 superior. People scoring below 70 are thought to have mental retardation which affects their ability to take care of themselves (dressing, bathing, toileting); their communication skills (understanding what is being said and being able to answer); and their social skills (with peers and adults).

Daniel Keyes does a masterful job of showing Charlie's evolution into an increasingly intelligent and perceptive individual, literally becoming smarter and more articulate as we read along in the text. Tragically, the effect of the treatment is only temporary. Over the long haul, Charlie's intelligence declines, compared to what his IQ was before the experiment.

This curricular module uses Keyes's novel to focus on ethical issues involving the rights of human subjects-in particular, issues involving the use of subjects who are developmentally challenged or highly vulnerable, such as prisoners, children and people with mental retardation.