Day 2 Session 1: Normative Frameworks (Discussant: Ariella Binik)
Towards Partnership with children, young people and parents in exploring the ethical challenges of clinical research with children: experience in Kilifi, Kenya
Katharine Wright [1], Vicki Marsh [2,3,4], Sassy Molyneux [2,5], Dorcas Kamuya [2,6]
1. Nuffield Council on Bioethics, University of Oxford
2. Public Health Research Department at the Kenya Medical Research Institute (KEMRI) - Wellcome Trust Research Programme, Kilifi, Kenya
3. Associate Professor, Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine, Oxford, UK
4. Research Associate, Ethox Centre, Nuffield Department of Population Health, Oxford, UK.
5. Nuffield Department of Medicine, University of Oxford
6. Global Health Bioethics Network, The Ethox Centre, University of Oxford
Abstract
In 2015, the UK-based Nuffield Council on Bioethics published a report Children and clinical research: ethical issues, which challenged many of the ethical assumptions underpinning historic approaches to the regulation of research involving children. While written by an 'expert' working party, a fundamental feature of the working party's approach to this two-year project was its ongoing engagement and partnership with children, young people and parents, both within the UK, and in Kilifi, Kenya where two working party members were based.
Partnership methods included a standing 'stakeholder group' of young people and parents, online surveys for both parents and children/young people, school based projects in London, Brighton and Kilifi, adult community engagement in Kilifi, and input from 'young people's advisory groups' (specialist groups developed to support children's research) in England, Scotland and the USA. Final outputs included a magazine-style summary of the main report, aimed at young people aged 14+ as well as adults, and a three minute animated film, itself produced as a result of a workshop of children and young people aged 10-18 (and now available with soundtracks in Spanish, Arabic and Chinese, as well as English).
Within the broad context of the UK-based engagement, this paper will focus on the input into this project by school children and adults in Kilifi. We will explore the practical elements of engagement (initial approaches, identification of participants, discussion methods, language used, analysis etc); the critical question of the role played by these contributions in the development of the thinking in the report itself; and the implications, both of involvement and of the report itself, for those participants, and other community members, in Kilifi.
The Architecture of Community Engagement in Global Health Research
James V. Lavery1,2 & Emma Richardson1,3
1. Centre for Ethical, Social & Cultural Risk, St. Michael’s Hospital
2. Dalla Lana School of Public Health & Joint Centre for Bioethics, University of Toronto
3. McMaster University
Abstract
The conversation about community engagement (CE) in global health research has been shaped by a relatively narrow set of ideas and mechanisms. Although rarely articulated, the implicit value proposition for global health research funders and their implementation partners is that CE can facilitate the acceptance of their goals and strategies by host communities. This common understanding of the purpose and value of CE has important ethical and practical implications and represents a significant simplification of a very complex set of human interactions and consequences that are triggered by the introduction of research activities. The tacit acceptance of this conventional framing by the global health research community perpetuates CE strategies that are unnecessarily superficial and that discount opportunities for CE to improve the impact of global health research and make it more ethical, and more valuable for host communities.
In this paper, we present a model of CE for global health research that provides funders, implementation partners and host communities with a conceptual architecture to aid in the design, implementation, and evaluation of CE activities for global health research programs and projects. The model integrates the findings of 10 in-depth case studies of CE from 7 countries and a variety of disease areas and research strategies with conceptual analyses of the ethical and practical goals of CE.
The CE model describes the relationships among key aspects of global health research program design and how these shape specific requirements for the design and management of the associated CE strategies. CE design has both conceptual and operational foundations and these, in turn, shape the way the specific goals of CE are understood for any global health research program. The goals of CE have both ethical and practical dimensions and, when elaborated and carefully-articulated, illuminate a range of possible outcomes that should broaden and deepen our understanding of the implications and potential value of CE for all stakeholders.
Justifying the co-production turn in research
Mark Sheehan [1]
1. Oxford NIHR Biomedical Research Centre Ethics Fellow, The Ethox Centre, University of Oxford
Abstract
My paper will begin by looking at the distinction between the intrinsic and instrumental value of community engagement. I will suggest that although the instrumental justifications for engagement are clearly distinct from the intrinsic ones, they do have an important role to play alongside the justification of research generally. In the main part of the paper I will examine a number of the intrinsic justifications for community engagement, with special attention to the ideals of the democratization of science and the co-production of scientific knowledge. I will suggest that these models fail in their attempt to provide adequate justification for community engagement.