Who Speaks for Me?: Addressing Variability in Informed Consent Practices for Minimal Risk Research Involving Foster Youth

Authors

Mary V. Greiner, Cincinnati Children's Hospital Medical Center and the University of CincinnatiFollow
Sarah J. Beal, Cincinnati Children’s Hospital Medical Center and University of CincinnatiFollow
Antonio Allen, Cincinnati Children's Hospital Medical Center and University of CincinnatiFollow
Vikash Patel, Cincinnati Children's Hospital Medical Center and University of CincinnatiFollow
Jareen Meinzen-Derr, Cincinnati Children's Hospital Medical Center and University of CincinnatiFollow
Armand Antommaria, Cincinnati Children's Hospital Medical Center and University of CincinnatiFollow

Keywords

child welfare; informed consent; research; foster care; custody

Disciplines

Bioethics and Medical Ethics | Health Services Research | Pediatrics

Abstract

Background: Youth in protective custody (i.e., foster care) are at higher risk for poorer physical and mental health outcomes compared with those who are not. These differences may be due in part to the lack of research on the population to create evidence-based recommendations for health care delivery. A potential contributor to this lack of research is difficulties in obtaining informed consent for empirical studies in this population. The objective of this study was to describe the approaches to obtaining informed consent in minimal risk studies of foster youth and provide recommendations for future requirements.

Methods: We conducted a systematic review of the literature to characterize the informed consent approaches in published minimal risk research involving youth in foster care. We searched PubMed, CINAHL, PsychINFO, Embase, ERIC, Scopus, and EBMR. Inclusion criteria were: studies conducted in the United States, included current foster youth, minimal risk, peer reviewed, and published in English. Full text was reviewed, and individuals required to consent and assent were extracted.

Results: Forty-nine publications from 33 studies were identified. Studies required 0 to 3 individuals to consent. Individuals required to give consent included case workers (16, 48%), foster caregivers (12, 36%), biological parents (7, 21%), judges (5, 15%), and guardian ad litems (2, 6%). Twenty-nine (88%) studies required the youth’s assent. The studies used 14 different combinations of individuals. One (3%) study utilized a waiver of consent.

Conclusions: There is no consistent approach for obtaining informed consent for foster youth to participate in minimal risk research. Consent should ideally involve individuals with legal authority and knowledge of the individual youth’s interests and should not be burdensome. Consensus regarding consent requirements may facilitate research involving foster youth.

Recommended Citation

Greiner, Mary V.; Beal, Sarah J.; Allen, Antonio; Patel, Vikash; Meinzen-Derr, Jareen; and Antommaria, Armand (2018) "Who Speaks for Me?: Addressing Variability in Informed Consent Practices for Minimal Risk Research Involving Foster Youth," Journal of Health Disparities Research and Practice: Vol. 11: Iss. 4, Article 7.
Available at: https://digitalscholarship.unlv.edu/jhdrp/vol11/iss4/7