The contributions of adolescent and parent perspectives to ethical planning of survey research on youth drug use and suicide behaviors are highlighted through an empirical examination of 322 7th-12th graders' and 160 parents' opinions on questions related to 4 ethical dimensions of survey research practice: evaluating research risks and benefits, establishing guardian permission requirements, developing confidentiality and disclosure policies, and using cash incentives for recruitment. Generational and ethnic variation in response to questionnaire items developed from discussions within adolescent and parent (...) focus groups are described. The article concludes with a discussion of the potential contributions and challenges of adolescent and parent perspectives for planning scientifically valid and ethically responsible youth risk survey research. (shrink)

BackgroundStreet-connected children and youth in low- and middle-income countries 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.MethodsAs 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.ResultsSubstantial 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.ConclusionsAlthough 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. (shrink)

This paper highlights a number of ethical dilemmas encountered in a pilot study with a hard-to-reach group of research participants with harmful childhood histories. Drawing on a project exploring black teenage mothers' understandings of their own childhood experiences of abuse, it is argued that in asking young mothers to talk about such an emotionally sensitive topic as their own harmful childhood, a number of challenges are posed about how to deal with number of key ethical principles. The paper begins by (...) outlining the context of the pilot study, including the research literature on this subject. It then discusses three key ethical principles that were considered during the process of the research: issues of gaining consent; and when the principle of confidentiality ought to be breached when a duty of care prerogative emerges. The paper explores these tensions in operationalising these principles when dealing with the competing needs and rights of gatekeepers, the young women and their carers, using occasional extracts from research findings to illustrate these tensions. The paper concludes with a discussion of the ethical challenges in accessing marginal voices in social research. (shrink)