Adapting ethical guidelines for adolescent health research to street-connected children and youth in low- and middle-income countries: a case study from western Kenya

• Published in: BMC medical ethics Vol. 16; no. 83; p. 89
• Main Authors: Embleton, L, Ott, M A, Wachira, J, Naanyu, V, Kamanda, A, Makori, D, Ayuku, D, Braitstein, P
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 18.12.2015; BioMed Central
• Subjects: Acquired immune deficiency syndrome; Adolescent; Adolescent Health; Adolescent medicine; AIDS; Beneficence; Biomedical research; Child; Child Health; Children & youth; Childrens health; Clinical Protocols - standards; Community; Consent; Drug use; Ethical aspects; Ethics; Ethics, Research; Focus groups; Guidelines as Topic - standards; Health aspects; Homeless Youth; Human subjects; Humans; Informed Consent - ethics; Kenya; Low income groups; Male; Medical research; Participation; Personal Autonomy; Population; Poverty; Research ethics; Researchers; Review boards; Social aspects; Social Justice; Socially handicapped children; Studies; Vulnerable Populations; Kenya
• ISSN: 1472-6939; 1472-6939
• DOI: 10.1186/s12910-015-0084-y

Street-connected children and youth (SCCY) in low- and middle-income countries (LMIC) have multiple vulnerabilities in relation to participation in research. These require additional considerations that are responsive to their needs and the social, cultural, and economic context, while upholding core ethical principles of respect for persons, beneficence, and justice. The objective of this paper is to describe processes and outcomes of adapting ethical guidelines for SCCY's specific vulnerabilities in LMIC. As part of three interrelated research projects in western Kenya, we created procedures to address SCCY's vulnerabilities related to research participation within the local context. These consisted of identifying ethical considerations and solutions in relation to community engagement, equitable recruitment, informed consent, vulnerability to coercion, and responsibility to report. Substantial community engagement provided input on SCCY's participation in research, recruitment, and consent processes. We designed an assent process to support SCCY to make an informed decision regarding their participation in the research that respected their autonomy and their right to dissent, while safeguarding them in situations where their capacity to make an informed decision was diminished. To address issues related to coercion and access to care, we worked to reduce the unequal power dynamic through street outreach, and provided access to care regardless of research participation. Although a vulnerable population, the specific vulnerabilities of SCCY can to some extent be managed using innovative procedures. Engaging SCCY in ethical research is a matter of justice and will assist in reducing inequities and advancing their health and human dignity.