Truth and consequences: ethics, confidentiality, and disclosure in adolescent longitudinal prevention research

Lothen-Kline, Christine; Howard, Donna E; Hamburger, Ellen K; Worrell, Kevin D; Boekeloo, Bradley O

doi:10.1016/S1054-139X(03)00184-8

« Previous Next »Journal of Adolescent Health
Volume 33, Issue 5 , Pages 385-394, November 2003

Truth and consequences: ethics, confidentiality, and disclosure in adolescent longitudinal prevention research

Christine Lothen-Kline, M.P.H, C.H.E.S.
- Department of Public and Community Health, College of Health and Human Performance, University of Maryland, College Park, Maryland, USA (C.L.-K., D.E.H., B.O.B.)
Donna E Howard, Dr.P.H.
- Department of Public and Community Health, College of Health and Human Performance, University of Maryland, College Park, Maryland, USA (C.L.-K., D.E.H., B.O.B.)
Ellen K Hamburger, M.D.
- School of Medicine and Health Sciences, Departments of Medicine and Pediatrics, George Washington University, Washington, DC, USA (E.K.H.)
Kevin D Worrell, M.D.
- Mid-Atlantic Permanente Medical Group, Rockville, Maryland, USA (K.D.W.)
Bradley O Boekeloo, Ph.D., M.S.
- Department of Public and Community Health, College of Health and Human Performance, University of Maryland, College Park, Maryland, USA (C.L.-K., D.E.H., B.O.B.)
- Address correspondence to: Bradley O. Boekeloo, Ph.D., M.S., Department of Public and Community Health, University of Maryland, 2387 Valley Drive, HHP Building, College Park, MD 20742, USA.

Accepted 10 March 2003.

Abstract

Purpose

To examine data from a natural experiment resulting from a change made in the confidentiality agreement midway through a randomized, longitudinal, controlled trial to prevent or delay adolescent alcohol use. The investigators explored the impact of the change on adolescents’ rates of participation and affirmative responses to a question on suicidal thoughts.

Methods

Adolescents 12–17 years old were administered a question on suicidal thoughts as part of a confidential exit interview after a general health examination with their primary care provider. After administration to 263 adolescents, the exit interview was made conditionally confidential with the remaining 181 adolescents. The revised consent form and protocol stipulated that researchers would reveal to appropriate professionals and parents any adolescent indicating suicidal thoughts. Prevalence estimates for the suicidal thoughts question and study participation rates were computed for conditions both before and after the change.

Results

Fewer adolescents responded affirmatively to the suicidal thoughts question when they were recruited using the revised (1%) than the original (8%) consent form and protocol (p = .001). The revised confidentiality agreement did not affect participation rates.

Conclusions

Adolescents who assent to participate in research studies may be less likely to disclose personal information regarding suicidal thoughts if they know that their disclosure may result in a break in confidentiality. Specific guidelines are needed for conditional and unconditional confidentiality agreements to study mental health in adolescent longitudinal prevention research.

Keywords: Adolescents, Confidentiality, Disclosure, Ethics, Longitudinal research, Mental health, Prevention, Randomized controlled trial, Risk behavior, Suicide