Referring and Reporting Research Participants at Risk: Views from Urban Adolescents

Abstract

Researching developmental risks of urban youth raises ethical concerns when an investigator discovers a participant is in jeopardy. This study collected data on 147 seventh, ninth, and eleventh graders' views of 3 investigator options: (1) taking no action and maintaining confidentiality, (2) reporting the problem to a concerned parent or adult, and (3) facilitating adolescent self-referrals. Participants judged these options within the context of 5 risk domains: substance abuse, child maltreatment, life-threatening behaviors, delinquency, and shyness. Judgments of reporting options were related to grade and ratings of risk severity, but not to moral reasoning. Confidentiality was viewed favorably for risk behaviors of low perceived severity or for which the consequences of adult discovery might introduce greater risk. Confidentiality was viewed unfavorably and reporting to adults favorably for child maltreatment and threats of suicide. Self-referral was viewed favorably across all grades and risk behaviors. Implications of adolescent perspectives for research ethics are discussed.

Screening for Postpartum Depression at Well-Child Visits: Is Once Enough During the First 6 Months of Life?

“…9 We were unable to demonstrate that creating an electronic record that could not be closed until screening cues were responded to improved detection or referral rates. However, given that failure to intervene when mothers screen positive for depression could actually be counterproductive, 35 additional study in a larger practice is needed before the approach is abandoned. The small number, consistency, and dedication to the study of the CAMP staff members undoubtedly contributed to the success of the intervention.…”

Patient perspectives on medical confidentiality

“…Patient opinions about when confidentiality can be broken without their permission vary by patient population, information content, and to whom the information would be given. Adolescents based acceptance of breaches on the perceived severity of the problem, with situations such as physical or sexual abuse and suicide threats justifying disclosure to appropriate officials 13–15,36 . Battered women participating in focus groups agreed that breaching confidentiality might be acceptable, but only in a situation in which the woman herself wanted relief from the burden of disclosure 26 .…”

Confidentiality and Disclosure in Non-Intervention Adolescent Risk Research

“…In a series of studies, Fisher and her colleagues asked youth and parents what investigators should do if during the course of a non-intervention study they found an adolescent's welfare to be in jeopardy (Fisher, 2002(Fisher, , 2003Fisher et al, 1996;Fisher & Wallace, 2000 Fisher, 2008;O'Sullivan & Fisher, 1997). In most instances, both teenage and adult respondents viewed a policy of referring the participant to appropriate youth services most favorably.…”