Results

Hepatitis Studies at the Willowbrook State School for Children with Mental Retardation
James M. DuBois
From 1956 through 1971, residents at the Willowbrook State School for Children with Mental Retardation were infected with live hepatitis in order to develop a vaccine. Parents gave permission for their children to participate in this study, often because it guaranteed acceptance into the overcrowded facility.

Making Everyone Feel Like a Winner
Celia B. Fisher
To minimize distress and the potential for distrust of staff, investigators researching aggression in boys with conduct disorder do not disclose the purpose of the low-risk research but rather present the study activities as a game. Fisher presents this as an example of best practice.

Considering Children's Dissent
Emily E. Anderson
Although 10-year old Ryan’s parents sign a consent form for participation in a clinical trial for a new drug for ADHD, Ryan refuses to assent.

Waiving Parental Permission
Emily E. Anderson
A researcher asks his institution’s IRB to grant a waiver of parental permission for a study on adolescent drug use and sexual activity.

Trouble on the Horizon
James M. DuBois and Angela Dunn
Administrators at a rehabilitation facility for teenage girls want to report the success of their programs in a regional adolescent health journal. However, data were originally collected as part of treatment and not for research purposes, and there is risk of certain girls being identifiable.

Severe Emotional Disturbance Studies
James M. DuBois
Dr. Randall has proposed two studies involving children with severe emotional disturbance (SED), one involving a control group and the other random assignment into foster care.

Jumping to Conclusions
Patricia Keith-Spiegel and Gerald P. Koocher
A researcher makes conclusions from her data that are inappropriate given the study design. The authors present this case as an example of poor research practice.

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.

Lack of Permission and Assent
Gerald P. Koocher and Patricia C. Keith-Spiegel
Researchers have the appropriate permissions and assent to observe playground behavior of specific children. Nonstudy children, unaware of the study, are observed only when interacting with study children and are not identified by name. The authors present this as a case of acceptable research practice.

Wrong Assumptions
Gerald P. Koocher and Patricia C. Keith-Spiegel
Researchers employ a method of passive consent in requesting permission from parents to survey their children regarding sensitive family issues. The authors present this case as an example of poor research practices.

Splitsville
Gerald P. Koocher and Patricia C. Keith-Spiegel
Parents disagree over enrolling their son in a research project using aversive conditioning to eliminate his cocaine addiction.

Research or Services?
Gerald P. Koocher and Patricia C. Keith-Spiegel
Parents are told that if they enroll their babies in a research project, the babies will receive an EEG to look for signs of brain damage. Babies not enrolled will not receive this diagnostic test.

Too Blue
Gerald P. Koocher and Patricia C. Keith-Spiegel
Teenagers were administered a widely used and standardized self-report depression scale as part of a larger battery of assessments. Ned Blue’s test indicated such an elevated score that the researcher was seriously concerned about the young man’s welfare.

Ethical Issues in Longitudinal Research with At-Risk Children and Adolescents
Brian Schrag
A researcher wants to conduct surveys and interviews with grade school children to study resilience and exposure to maladaptive environments. The school principal insists that she does not need parental consent for the study, as the school supports the study.

Issues of Informed Consent for Research with Juvenile Detainees
Emily E. Anderson
Researchers assessing the service needs of juvenile detainees request a waiver of parental permission.

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.

Getting Consent to do Research with Institutionalized Children
Emily E. Anderson
Investigators studying the neurological correlates of AIDS in infected children evaluate the risks and benefits to institutionalized child participants.

Reporting Findings of Adolescent Mental Health Issues Discovered in Research
Emily E. Anderson
An institutional review board reviews a study that aims to develop a screening program to identify adolescents at risk for suicide.

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.