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

L. Embleton, Mary Ott, J. Wachira, V. Naanyu, A. Kamanda, D. Makori, D. Ayuku, P. Braitstein

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

Background: 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. Methods: 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. Results: 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. Conclusions: 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.

Original languageEnglish (US)
Article number84
JournalBMC Medical Ethics
Volume16
Issue number1
DOIs
StatePublished - Dec 18 2015

Fingerprint

Homeless Youth
Kenya
Guidelines
adolescent
vulnerability
income
health
participation
Research
Coercion
Social Justice
justice
human dignity
Community-Institutional Relations
Personhood
Beneficence
Dissent and Disputes
community
Adolescent Health
respect

Keywords

  • Consent
  • Ethics
  • Research
  • Street children and youth

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Health Policy

Cite this

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. / Embleton, L.; Ott, Mary; Wachira, J.; Naanyu, V.; Kamanda, A.; Makori, D.; Ayuku, D.; Braitstein, P.

In: BMC Medical Ethics, Vol. 16, No. 1, 84, 18.12.2015.

Research output: Contribution to journalArticle

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