Results

The Tuskegee Syphilis Study
James M. DuBois
From 1932 through 1972, the U.S. Public Health Service enrolled African-American men in a non-therapeutic research study to observe the natural course of syphilis. Subjects were not told they had syphilis, nor were they treated for syphilis or any secondary problems. The study continued even after penicillin became the standard treatment for syphilis in the 1940’s and was not ended until 1972, when a public health official went to the press.

Potential Inability to Provide Informed Consent Due to Substance Abuse
Celia B. Fisher
Researchers develop creative ways to evaluate the consent of participants whose capacity to give truly informed consent may be compromised due to substance use and/or other comorbid disorders. Fisher presents this as an example of best practice.

Differing Perceptions of Risks and Benefits
Emily E. Anderson
A researcher conducts a non-therapeutic study with young adults with Tourette’s Syndrome and their families. The participants’ perceptions of risks and benefits differ from those of the researcher.

Getting Community Input
Emily E. Anderson
A researcher’s study of the link between behavioral disorders and childhood deprivation of attention by the male parent in African-American males angers community members who feel they should have been consulted for their input prior to IRB approval.

Family Involvement in Informed Consent
Emily E. Anderson
As principal investigator of a study on Mexican-American women and postpartum depression, you learn that many potential study participants want to discuss the study with their husbands before signing a consent form.

Learning
Joan Sieber
Dr. Jones collects oral histories from members of an ethnically diverse neighborhood as part of a study on aggressive behavior in children and would like to share the compiled document with community members to promote study buy-in. An IRB member claims that to do so would violate participant confidentiality.

How Much is Enough?
Patricia Keith-Spiegel and Gerald P. Koocher
A researcher and study participants differ in opinion over what is a sufficient amount to pay prisoners for research participation.

Observing Self-injurious Behavior
Gerald P. Koocher and Patricia C. Keith-Spiegel
In order to get baseline data for an experimental study on self-injurious behavior in autistic children, participants were observed without intervention unless the child was engaging in behavior that would cause permanent injury. The authors present this case as an example of best practice.

Power for the People
William Timberlake
Professor A proposes to test the theory that black male criminals suffer from early childhood deprivation of attention by the male parent by comparing interviews of black male ex-convicts with men that have never been convicted of a crime matched on socioeconomic status, intact versus disrupted family, and presence versus absence of alternative male figures. This case illustrates the conflicts that can arise when a behavioral researcher’s hypotheses and study questions may be perceived to be based upon stereotypes and the importance of involving local communities in the research process.

Working at Cross Purposes
Joan E. Sieber
A researcher attempts to gather information from Chicano families regarding children’s needs. The researcher is unaware that many of the people in the community are not legal residents of the U.S., a fact that may effect respondents answers and the sampling design.

Music Therapy
Brian Schrag
A participant in a low-risk, non-therapeutic study on the genetics and pathophysiology of schizophrenia appears confused. The graduate research assistant collecting data from her is unsure if she is competent to consent to research participation.

Proposed Study of the Natural Course of Schizophrenia with Self-Help Supports
Jean Campbell
In response to the suggestions of advocates, mental health consumers, and researchers that people with mental illness suffer more from the disabling effects of psychotropic medications, institutionalization, and other treatments than from the disease itself, government scientists propose a study of the natural course of schizophrenia.

Conducting Survey Research with Adolescents with Anxiety Disorders
Emily E. Anderson
You are a researcher administering surveys to adolescents with anxiety disorders. The IRB asks you to change the information included on parental consent forms.

Ensuring Fair Representation of Minority Children in Research
Emily E. Anderson
A multi-site study comparing several treatment modalities for children with ADHD using random assignment seeks to ensure fair representation and access to research benefits for minority children given issues of potential overdiagnosis and underrepresentation in care.

Placebo Trials with Prevalent but Unproven Treatments
Emily E. Anderson
At a residential treatment center for persons with mental retardation, lithium is frequently used to treat aggressive and self-injurious adolescents. However, this use of the drug has never been systematically tested on this population. Investigators propose a placebo-control experimental design but some staff members believe this is depriving patients of an established treatment.

Research in a War Zone
Emily E. Anderson
In a study investigating exposure to violence and post-traumatic stress disorder (PTSD) in children in Palestine, researchers consider how best to obtain informed consent from child participants and parents who are vulnerable due to trauma and suspicious of strangers.

Waivers of Parental Permission for Research with Gay and Lesbian Adolescents
Emily E. Anderson
Researchers seek a wavier of parental/guardian consent for a study examining psychosocial stressors and anxiety and depressive disorders in gay and lesbian adolescents.