Community Participation and Child Rights: An Ethical and Scientific Analysis

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This project undertakes a one-year active engagement with community-based service providers and child advocates to structure a process by which to evaluate the ethical implications of new concepts of child rights and new biomedical technologies for evaluating stress in children. The academic goal is to document a process that other scientific groups can use to work with communities and public groups on controversial scientific interventions. The societal goal is to enhance the community basis for the collaboration of academia and civil society in generating public policy and practice involving science and technology. The project proceeds by a series of meetings with staff and parents of a child service/advocacy organization that will: a) exchange information and points of view, through both written materials and discussions, around the ethical concerns and frameworks that guide the design and evaluation of their services and those guiding the scholarship and research activities of the investigators; b) discuss and debate potential risks and benefits of the child rights approach and its relationship to cortisol measurements as a strategy to assess stress in children, and c) discuss and debate use of this technique to detect early signs of developmental stress, to monitor the effectiveness of social services, and to evaluate the appropriateness of institutional care settings. The project will archive written material and document discussion covering these issues over the eight months of dialogue. The goal is to attempt to develop a consensus on ethical issues relating to conceptual frameworks, research methodologies, service design and evaluation to assess stress in disadvantaged children in this particular situation as well as more universally. The research team, an experimental psychologist, an ethicist, and a physician will collaborate on scholarly publications to provide guidelines for the exchange of information between service agencies, advocacy groups and academics who share a commitment to improving the well-being of disadvantaged children.