Engaging Ethical Issues Associated with Research and Public Health Interventions During Humanitarian Crises: Review of a Dialogic Workshop

Compte-rendu / Review

The Assault on Human Rigths and the Resilience of the Andean Dream: Health Inequities in Ecuador. IV Annual Distinguished Lecture sponsored by the Center for Research on Ethnicity, Culture and Health; School of Public Health; University of Michigan

The point of departure for these reflections is life, since its protection is the central purpose encouraging the defense of human rights and of public health. Life in the Andes has an exceptional diversity. Particularly in Ecuador, my country, this diversity constitutes a characteristic sign that is expressed in two main forms: natural megadiversity and multiculturalism. Indeed, Ecuador’s small territory synthesizes practically all types of lifezones that exist on Earth, having received the gift of high average rates of solar energy and abundant nutritional sources, which have facilitated the natural reproduction of countless species that show their beautiful vitality in the variety of ecosystems that compose the Andean mountain range, the tropical plains, the Amazon humid forests, and the Galapagos Islands. But besides being a highly biodiverse country, it is also a plurinational and multi-cultural society, in which the activity of human beings, organized into social conglomerates of different historical and cultural backgrounds, have formed more than a dozen nations and peoples. Regrettably this natural and human wealth has not been able to bear its best fruits due to the violent operation of a deep social inequity – unfortunately also one of the highest in the Americas—which conspires against life and is reproduced in national and international inequitable relations. This structural inequity has changed its form throughout the centuries and currently has reached its highest and most perverse level of development.

International public goods through integrated natural resources management research in CGIAR partnerships

The CGIAR System conducts research to produce international public goods (IPG) that are of wide applicability creating a scientific base which speeds and broadens local adaptive development. Integrated natural resources management (INRM) research is sometimes seen to be very location specific and consequently does not lend itself readily to the production of IPGs. In this paper we analyse ways in which strategic approaches to INRM research can have broad international applicability and serve as useful foundations for the development of locally adapted technologies. The paper describes the evolution of the IPG concept within the CGIAR and elaborates on five major types of IPGs that have been generated from a varied set of recent INRM research efforts. CGIAR networks have both strengths and weaknesses in INRM research and application, with enormous differences in relative research and development capacities, responsibilities and data access of its partners, making programme process evolution critical to acceptance and participation. Many of the lessons learnt regarding challenges and corresponding IPG research approaches are relevant to designing and managing future multi-scale, multi-locational, coordinated INRM programmes involving broad-based partnerships to address complex environmental and livelihood problems for development.

Recruiting in public places : A strategy to increase diversity in qualitative research samples

For some research projects, recruiting in public places is an invaluable addition to sampling strategies. It complements the more traditional recruitment strategies by providing researchers with' opportunities to include people in the research who would otherwise be excluded. One of the limitations of selective and snowball sampling is that participants often come from the same social group. Participants from these social groups often share similar experiences and ways of thinking about those experiences. The aim of recruiting in public places is to move beyond this 'in group' to ensure a wider perspective. This paper illustrates how recruiting in public places can provide greater sample diversity for theoretical strength. The paper begins with a brief overview of recruiting in public places. It then describes the theoretical considerations associated with this recruiting strategy. The paper demonstrates how recruiting in public places facilitates grounded theory by providing comparisons that are informed by diverse experiences. Using examples and a case study, we illustrate how recruiting in public places can complement selective, snowball and theoretical sampling to ensure a more comprehensive sample.

Global priority setting for Cochrane systematic reviews of health promotion and public health research

Background: Systematic reviews of health promotion and public health interventions are increasingly being conducted to assist public policy decision making. Many intra-country initiatives have been established to conduct systematic reviews in their relevant public health areas. The Cochrane Collaboration, an international organisation established to conduct and publish systematic reviews of healthcare interventions, is committed to high quality reviews that are regularly updated, published electronically, and meeting the needs of the consumers.

Aims: To identify global priorities for Cochrane systematic reviews of public health topics.

Methods: Systematic reviews of public health interventions were identified and mapped against global health risks. Global health organisations were engaged and nominated policy-urgent titles, evidence based selection criteria were applied to set priorities.

Results: 26 priority systematic review titles were identified, addressing interventions such as community building activities, pre-natal and early infancy psychosocial outcomes, and improving the nutrition status of refugee and displaced populations.

Discussion: The 26 priority titles provide an opportunity for potential reviewers and indeed, the Cochrane Collaboration as a whole, to address the previously unmet needs of global health policy and research agencies.

Research methods, evidence and public health

In theory, our research questions should drive our choice of method. In practice, we know this is not always the case. At various stages of the research process different factors may apply to restrict the choice of research method. These filters might include a series of inter-related factors such as the political context of the research, the disciplinary affiliation of the researchers, the research setting and peer-review. We suggest that as researchers conduct research and encounter the various filters they come to know the methods that are more likely to survive the filtering process. In future projects they may favour these methods. Public health problems and research questions may increasingly be framed in the terms that can be addressed by a restricted array of methods. Innovative proposals - where new methods are applied to old problems, old methods to new areas of inquiry and high-quality interdisciplinary research - may be unlikely to survive the processes of filtering. This may skew the public health knowledge base, limiting public health action. We argue that we must begin to investigate the process of research. We need to document how and why particular methods are chosen to investigate particular sets of public health problems. This will help us understand how we know what we know in public health and help us plan how we may more appropriately draw upon a range of research methods.

Doing it in the courts : opening research to public scrutiny

This paper analyses the positioning of researchers and their research by the courts in legal complaints brought against educational authorities. Over the past decade at least eleven formal complaints related to deaf children's access to native sign language in education have been lodged with the Human Rights and Equal Opportunity Commission.

This ongoing legal action has brought a pedagogical debate over educational policy into the courts. The most recent case to reach the Federal Court of Australia was taken by the families of two deaf children against a state educational authority, allegedly for failing to provide the children with an adequate education. The complainants called for teachers fluent in Auslan (Australian Sign Language) or interpreters to be employed alongside mainstream teachers.

As a researcher in this field, I have acted as an expert witness in eight of these cases, tendered my thesis as evidence, and been cross-examined in the Federal Court. Court transcripts from the two most recent cases provide the data for an analysis of the way in which legal counsel position researchers (as 'advocates', having vested interests, representing lobby groups) and interpret their research to support the legal arguments being made.

Are the potential benefits of a community-based participatory approach to public health research worth the potential cost?

Much of public health research is conducted in a community setting or is designed to target particular population groups. Community-based participatory research (CBPR) is gaining recognition as good practice in studies of this type(Flicker et al 2007). Its merit is based on the inclusion of the community as active participants at all stages of the research process (Goodman 2006). The focus on justice and equity in this approach is seen to contribute to a range of additional potential research benefits including increased relevance and sustainability of interventions arising from the research ( Blumenthal 2004; Wallestein 2006) However, it is widely acknowledged that adoption of a consciously CBPR approach requires additional expertise. time and resources from researchers and from communities (Tanjasiri et al 2002; Massaro & Claiborne 2001; Israel et al 1998). Adoption of CBPR is also limited by existing infrastructures which are supportive of more· traditional models of research. Changes to professional development programs, funding guidelines and criteria. grant review processes and ethics requirements are needed to support increased application of this approach (Israel et al 2001). As all research resources are limited, the potential additional benefits offered by CBPR over and above a more traditional research approach need to be weighed against the potential additional costs involved. Changes to research infrastructure are unlikely to occur until the costs and
benefits of a consciously CBPR approach as compared to a more traditional research approach can be demonstrated.

This is an exploratory paper that summarises the arguments put forward to date in relation to CBPR. A research case study and an evaluation framework are then used for a conceptual analysis of differences in the potential costs and benefits of the two approaches. Firstly, the paper describes the differences between traditional and consciously CBPR approaches. The reported benefits of CBPR are then outlined, followed by a discussion of the potential costs. Finally, the potential costs are compared to the potential benefits of using a CBPR approach, using a case study of existing research.