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Exploring the Rights of Human Subjects by Eugene Provenzo, Ph.D. Background Flowers for Algernon is the story of a mentally challenged man, Charlie Gordon, who undergoes an experimental operation that researchers hope will increase his intelligence. The title of the book takes its name from a mouse named "Algernon" upon whom the procedure had been tested before Charlie. At first, the experiment seems a tremendous success. Charlie's intelligence quickly surpasses that of the doctors who conducted the operation on him. In time though, his intelligence begins to fade. In the end, Charlie becomes even less intelligent than he was before the operation. The story is brilliantly told from the perspective of Charlie by means of a personal journal. We literally see his first thoughts about participating in the experiment, and his increasing intelligence and finally decline as the experiment progresses. Flowers for Algernon raises a number of important ethical issues about the rights of human subjects-in particular, informed consent. The novel is a moving and creative work of literature and is an excellent starting point for class discussion and reflective writing exercises. The history of human subjects protections is rich, and it offers an opportunity to explore Nazi experiments, international research and, generally, the relationship between the rights of individuals and the betterment of society. A timeline with some of this history is available at http://www.history.nih.gov/01Docs/historical/2020b.htm In July 12, 1974, the National Research Act (Pub. L. 93-348) became law. It created a National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The main task of the Commission was to identify the basic ethical principles that should be followed in biomedical and behavioral research involving human subjects. In addition, the Commission established guidelines for researchers. Specifically, these included: 1. the boundaries between biomedical and behavioral research and the accepted and routine practice of medicine; 2. the role of assessment of risk-benefit criteria in the determination of the appropriateness of research involving human subjects; 3. appropriate guidelines for the selection of human subjects for participation in such research, and 4. the nature and definition of informed consent in various research settings. (Source: http://ohsr.od.nih.gov/guidelines/belmont.html.) The Belmont Report summarized the findings of the Commission in the course of its deliberations. The report was named after a conference center at the Smithsonian Institution. It provides a statement of fundamental ethical principles and guidelines that should be followed in the conduct of research involving human subjects. That same year, the Belmont Report and National Research Act were followed by the creation of a comprehensive Federal law to govern research on humans. The Code of Federal Regulations has a section addressing "Protection of Human Subjects," based on the Belmont Report. The Belmont Report was developed as a result of the abuse of human subjects in a number of government studies. The most important of these was the Tuskegee Syphilis Study. This was a clinical study conducted from 1932 to 1972 in Tuskegee, Alabama. The study followed 399 poor, and largely illiterate, black sharecroppers. Essentially, they were given the impression that they were being given treatment for the disease of syphilis, when in fact they were being observed to study effects the disease had on individuals when it ran its normal course. Because they were poor, largely illiterate and denied equal rights as part of a discriminated against racial minority, the participants of the Tuskegee Syphilis Study were highly vulnerable. The study violated fundamental ethical principles because it did not disclose to the subjects the fact that they were participating in research and that such participation put them at risk - that is, the study violated rules for informed or valid consent. The Belmont Report is a milestone in the U.S. study and implementation of practical ethics. To this day, nearly every experiement involving people is reviewed - and approved or rejected - by institutions following to ethical standards identified at Belmont. Flowers for Algernon addresses a number of important ethical issues including the ability of experimental subjects to understand how an experiment might affect their lives, the obligation of scientists performing a treatment to make sure that their subjects are aware of how they might be affected, and the ethics of having a person participate in a potentially risky experiment that might benefit the advancement of science and humanity. The novel won the 1960 Hugo Award for the best short fiction work of science fiction from the World Science Fiction Society and a Nebula Award in 1966 for the best novel of the year from the Science Fiction Writers of America. The novel has many interesting links to popular culture. It was made into a 1968 movie titled Charly, for which Cliff Robertson won an academy award for his portrayal of the main character. More recently Matthew Modene acted in a television program based on the novel. Flowers for Algernon is the story of a mentally challenged man, Charlie Gordon, who undergoes an experimental operation that researchers hope will increase his intelligence. The title of the book takes its name from a mouse named "Algernon" upon whom the procedure had been tested before Charlie. At first, the experiment seems a tremendous success. Charlie's intelligence quickly surpasses that of the doctors who conducted the operation on him. In time though, his intelligence begins to fade. In the end, Charlie becomes even less intelligent than he was before the operation. The story is brilliantly told from the perspective of Charlie by means of a personal journal. We literally see his first thoughts about participating in the experiment, and his increasing intelligence and finally decline as the experiment progresses. Flowers for Algernon raises a number of important ethical issues about the rights of human subjects-in particular, informed consent. The novel is a moving and creative work of literature and is an excellent starting point for class discussion and reflective writing exercises. The history of human subjects protections is rich, and it offers an opportunity to explore Nazi experiments, international research and, generally, the relationship between the rights of individuals and the betterment of society. A timeline with some of this history is available at http://www.history.nih.gov/01Docs/historical/2020b.htm In July 12, 1974, the National Research Act (Pub. L. 93-348) became law. It created a National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The main task of the Commission was to identify the basic ethical principles that should be followed in biomedical and behavioral research involving human subjects. In addition, the Commission established guidelines for researchers. Specifically, these included: 1. the boundaries between biomedical and behavioral research and the accepted and routine practice of medicine; 2. the role of assessment of risk-benefit criteria in the determination of the appropriateness of research involving human subjects; 3. appropriate guidelines for the selection of human subjects for participation in such research, and 4. the nature and definition of informed consent in various research settings. (Source: http://ohsr.od.nih.gov/guidelines/belmont.html.) The Belmont Report summarized the findings of the Commission in the course of its deliberations. The report was named after a conference center at the Smithsonian Institution. It provides a statement of fundamental ethical principles and guidelines that should be followed in the conduct of research involving human subjects. That same year, the Belmont Report and National Research Act were followed by the creation of a comprehensive Federal law to govern research on humans. The Code of Federal Regulations has a section addressing "Protection of Human Subjects," based on the Belmont Report. The Belmont Report was developed as a result of the abuse of human subjects in a number of government studies. The most important of these was the Tuskegee Syphilis Study. This was a clinical study conducted from 1932 to 1972 in Tuskegee, Alabama. The study followed 399 poor, and largely illiterate, black sharecroppers. Essentially, they were given the impression that they were being given treatment for the disease of syphilis, when in fact they were being observed to study effects the disease had on individuals when it ran its normal course. Because they were poor, largely illiterate and denied equal rights as part of a discriminated against racial minority, the participants of the Tuskegee Syphilis Study were highly vulnerable. The study violated fundamental ethical principles because it did not disclose to the subjects the fact that they were participating in research and that such participation put them at risk - that is, the study violated rules for informed or valid consent. The Belmont Report is a milestone in the U.S. study and implementation of practical ethics. To this day, nearly every experiement involving people is reviewed - and approved or rejected - by institutions following to ethical standards identified at Belmont. Flowers for Algernon addresses a number of important ethical issues including the ability of experimental subjects to understand how an experiment might affect their lives, the obligation of scientists performing a treatment to make sure that their subjects are aware of how they might be affected, and the ethics of having a person participate in a potentially risky experiment that might benefit the advancement of science and humanity. The novel won the 1960 Hugo Award for the best short fiction work of science fiction from the World Science Fiction Society and a Nebula Award in 1966 for the best novel of the year from the Science Fiction Writers of America. The novel has many interesting links to popular culture. It was made into a 1968 movie titled Charly, for which Cliff Robertson won an academy award for his portrayal of the main character. More recently Matthew Modene acted in a television program based on the novel.

Exploring the Rights of Human Subjects

by Eugene Provenzo, Ph.D.

Background

Flowers for Algernon is the story of a mentally challenged man, Charlie Gordon, who undergoes an experimental operation that researchers hope will increase his intelligence. The title of the book takes its name from a mouse named "Algernon" upon whom the procedure had been tested before Charlie.

At first, the experiment seems a tremendous success. Charlie's intelligence quickly surpasses that of the doctors who conducted the operation on him. In time though, his intelligence begins to fade. In the end, Charlie becomes even less intelligent than he was before the operation.

The story is brilliantly told from the perspective of Charlie by means of a personal journal. We literally see his first thoughts about participating in the experiment, and his increasing intelligence and finally decline as the experiment progresses. Flowers for Algernon raises a number of important ethical issues about the rights of human subjects-in particular, informed consent. The novel is a moving and creative work of literature and is an excellent starting point for class discussion and reflective writing exercises.

The history of human subjects protections is rich, and it offers an opportunity to explore Nazi experiments, international research and, generally, the relationship between the rights of individuals and the betterment of society. A timeline with some of this history is available at http://www.history.nih.gov/01Docs/historical/2020b.htm

In July 12, 1974, the National Research Act (Pub. L. 93-348) became law. It created a National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The main task of the Commission was to identify the basic ethical principles that should be followed in biomedical and behavioral research involving human subjects. In addition, the Commission established guidelines for researchers. Specifically, these included: 1. the boundaries between biomedical and behavioral research and the accepted and routine practice of medicine; 2. the role of assessment of risk-benefit criteria in the determination of the appropriateness of research involving human subjects; 3. appropriate guidelines for the selection of human subjects for participation in such research, and 4. the nature and definition of informed consent in various research settings. (Source: http://ohsr.od.nih.gov/guidelines/belmont.html.)

The Belmont Report summarized the findings of the Commission in the course of its deliberations. The report was named after a conference center at the Smithsonian Institution. It provides a statement of fundamental ethical principles and guidelines that should be followed in the conduct of research involving human subjects. That same year, the Belmont Report and National Research Act were followed by the creation of a comprehensive Federal law to govern research on humans. The Code of Federal Regulations has a section addressing "Protection of Human Subjects," based on the Belmont Report.

The Belmont Report was developed as a result of the abuse of human subjects in a number of government studies. The most important of these was the Tuskegee Syphilis Study. This was a clinical study conducted from 1932 to 1972 in Tuskegee, Alabama. The study followed 399 poor, and largely illiterate, black sharecroppers. Essentially, they were given the impression that they were being given treatment for the disease of syphilis, when in fact they were being observed to study effects the disease had on individuals when it ran its normal course.

Because they were poor, largely illiterate and denied equal rights as part of a discriminated against racial minority, the participants of the Tuskegee Syphilis Study were highly vulnerable. The study violated fundamental ethical principles because it did not disclose to the subjects the fact that they were participating in research and that such participation put them at risk - that is, the study violated rules for informed or valid consent.

The Belmont Report is a milestone in the U.S. study and implementation of practical ethics. To this day, nearly every experiement involving people is reviewed - and approved or rejected - by institutions following to ethical standards identified at Belmont.

Flowers for Algernon addresses a number of important ethical issues including the ability of experimental subjects to understand how an experiment might affect their lives, the obligation of scientists performing a treatment to make sure that their subjects are aware of how they might be affected, and the ethics of having a person participate in a potentially risky experiment that might benefit the advancement of science and humanity.

The novel won the 1960 Hugo Award for the best short fiction work of science fiction from the World Science Fiction Society and a Nebula Award in 1966 for the best novel of the year from the Science Fiction Writers of America.

The novel has many interesting links to popular culture. It was made into a 1968 movie titled Charly, for which Cliff Robertson won an academy award for his portrayal of the main character. More recently Matthew Modene acted in a television program based on the novel.

Flowers for Algernon is the story of a mentally challenged man, Charlie Gordon, who undergoes an experimental operation that researchers hope will increase his intelligence. The title of the book takes its name from a mouse named "Algernon" upon whom the procedure had been tested before Charlie.
At first, the experiment seems a tremendous success. Charlie's intelligence quickly surpasses that of the doctors who conducted the operation on him. In time though, his intelligence begins to fade. In the end, Charlie becomes even less intelligent than he was before the operation.

The Belmont Report summarized the findings of the Commission in the course of its deliberations. The report was named after a conference center at the Smithsonian Institution. It provides a statement of fundamental ethical principles and guidelines that should be followed in the conduct of research involving human subjects. That same year, the Belmont Report and National Research Act were followed by the creation of a comprehensive Federal law to govern research on humans. The Code of Federal Regulations has a section addressing "Protection of Human Subjects," based on the Belmont Report.

The Belmont Report was developed as a result of the abuse of human subjects in a number of government studies. The most important of these was the Tuskegee Syphilis Study. This was a clinical study conducted from 1932 to 1972 in Tuskegee, Alabama. The study followed 399 poor, and largely illiterate, black sharecroppers. Essentially, they were given the impression that they were being given treatment for the disease of syphilis, when in fact they were being observed to study effects the disease had on individuals when it ran its normal course.

Because they were poor, largely illiterate and denied equal rights as part of a discriminated against racial minority, the participants of the Tuskegee Syphilis Study were highly vulnerable. The study violated fundamental ethical principles because it did not disclose to the subjects the fact that they were participating in research and that such participation put them at risk - that is, the study violated rules for informed or valid consent.

The Belmont Report is a milestone in the U.S. study and implementation of practical ethics. To this day, nearly every experiement involving people is reviewed - and approved or rejected - by institutions following to ethical standards identified at Belmont.

Flowers for Algernon addresses a number of important ethical issues including the ability of experimental subjects to understand how an experiment might affect their lives, the obligation of scientists performing a treatment to make sure that their subjects are aware of how they might be affected, and the ethics of having a person participate in a potentially risky experiment that might benefit the advancement of science and humanity.

The novel has many interesting links to popular culture. It was made into a 1968 movie titled Charly, for which Cliff Robertson won an academy award for his portrayal of the main character. More recently Matthew Modene acted in a television program based on the novel.