Background International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income countries, highlighting the need to take account of voices from more diverse contexts. Methods Between January and March 2014, 56 community representatives and secondary school students were involved in eight group discussions to explore views on the acceptability of involving children and adolescents in research, and how these groups should be involved in decision-making about their own participation. Discussions were voice-recorded and transcriptions analyzed using Framework Analysis, combining deductive and inductive approaches. Results Across these discussions, the idea of involving children and adolescents in decision-making about research participation was strongly supported given similar levels of responsibility carried in everyday life; existing capacity that should be recognized; the opportunity for learning involved; varying levels of parental control; and generational shifts towards greater understanding of science for adolescents than their parents. Joint decision-making processes were supported for older children and adolescents, with parental control influenced by perceptions of the risks involved in participation. Conclusions Moves towards more active involvement of children and adolescents in planning studies and in making decisions about their participation are supported by these findings from Kenya. Important emerging considerations include the need to take account of the nature of proposed studies and prevailing attitudes and understanding of research in identifying children’s and adolescents’ roles. More research is needed to expand diversity and develop approaches to joint assent and consent processes that would fairly represent children’s and adolescents’ wishes and interests, towards their long term benefit. Electronic supplementary material The online version of this article (10.1186/s12910-019-0375-9) contains supplementary material, which is available to authorized users.

Informed consent requirements for conducting research with human participants are set by institutional review boards (IRBs) following established guidelines. Despite this, researchers continue to face challenges in seeking and obtaining informed consent. This study discusses researchers' views of such problems in Lebanon and Qatar, which vary in research regulation. We conducted in-depth interviews with 52 academic researchers from various fields of research in both countries and analyzed them using thematic analysis. Important disjunctions emerged between IRB requirements and actual practice. Variations in obtaining informed consent were affected by the research context, type of research, and the prevalent cultural norms and values. Regulatory systems and guidelines for informed consent do not necessarily ensure ethical research conduct. Implications for improvement are presented.

The ethical challenges of global health research become particularly acute in emergency contexts, and are exacerbated by historic inequities and imbalances in power and influence. Drawing on the findings of an international working group established by the Nuffield Council on Bioethics, this article argues for the need to take a broader approach to ‘research ethics’ as traditionally understood, to include the role of ‘duty-bearers’ such as funders, governments, research institutions and journals. An ‘ethical compass’ of three core values (equal respect, fairness and helping reduce suffering) supports ethical reflection at the level of policy, as well as on the ground.

According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role.

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