Human Participants Challenges in Youth-Focused Research: Perspectives and Practices of IRB Administrators

Ethics & Behavior, Vol. 14, No. 4, pp. 335-349, 2004

Posted: 8 May 2006

See all articles by Diane Wagener

Diane Wagener

affiliation not provided to SSRN

Amy K. Sporer

University of Illinois at Chicago

Mary Simmerling

Adler University; Cornell University, Weill Cornell Medical College

Jennifer Flome

RTI International

Christina An

affiliation not provided to SSRN

Susan J. Curry

University of Iowa - College of Public Health

Abstract

The purpose of this research was to understand institutional review board (IRB) challenges regarding youth-focused research submissions and to present advice from administrators. Semistructured self-report questionnaires were sent via e-mail to administrators identified using published lists of universities and hospitals and Internet searches. Of 183 eligible institutions, 49 responded. One half indicated they never granted parental waivers. Among those considering waivers, decision factors included research risks, survey content, and feasibility. Smoking and substance abuse research among children was generally considered more than minimal risk. These findings are consistent with those from a study conducted by Mammel and Kaplan (1995), which investigated IRB practices concerning protocols involving adolescent participants. IRBs and investigators need to become aware of regulations flexibility to ensure adequate participant protection. Investigators need to limit jargon and assumptions about participants' understanding of research objectives.

Keywords: research, IRB, ethics

Suggested Citation

Wagener, Diane and Sporer, Amy K. and Simmerling, Mary and Flome, Jennifer and An, Christina and Curry, Susan J., Human Participants Challenges in Youth-Focused Research: Perspectives and Practices of IRB Administrators. Ethics & Behavior, Vol. 14, No. 4, pp. 335-349, 2004, Available at SSRN: https://ssrn.com/abstract=899561

Diane Wagener

affiliation not provided to SSRN ( email )

No Address Available

Amy K. Sporer

University of Illinois at Chicago ( email )

1200 W Harrison St
Chicago, IL 60607
United States

Mary Simmerling (Contact Author)

Adler University ( email )

17 N. Dearborn
Chicago, IL 60604
United States

Cornell University, Weill Cornell Medical College ( email )

1300 York Avenue
New York, NY 10065
United States

HOME PAGE: http://https://vivo.weill.cornell.edu/display/cwid-mcs2006

Jennifer Flome

RTI International ( email )

1615 M Street NW, Suite 740
Washington, DC 20036-3209
United States

Christina An

affiliation not provided to SSRN ( email )

No Address Available

Susan J. Curry

University of Iowa - College of Public Health ( email )

200 Hawkins Drive, E22OH1 GH
Iowa City, IA 52242
United States
(319) 384-5452 (Phone)
(319) 384-5455 (Fax)

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