The concept of social value in developing countries
Geoffrey Lairumbi
The need for proper ethical guidance on research primarily aimed at improving public health was raised during a follow-up workshop to discuss the ethics of health care research in developing countries held in Cape Town SA in 2004 (NCOB 2005). During this workshop, it was noted that different types of research such as epidemiological and operational research raise different ethical challenges regarding the appropriation of benefits, and that these issues are not specifically addressed by the current guidelines, most of which relate to clinical trials. These issues were also particularly discussed during the recently concluded 7th Global Forum on Bioethics in Research held in Karachi, Pakistan where it was suggested that in order to ensure that post research benefits are realized there should be a mechanism to guide the allocation of responsibilities, especially for those benefits related to the wider population. Similarly there have been calls to extend the bioethics discourse beyond the micro level of interpersonal relations and individual health to include ethical considerations pertaining to public/population health at the level of institutions, national and international relations in order to address the limited access to benefits of biomedical research experienced by most people in society (Benatar, Singer & Daar 2005; Rhodes 2005). This seems to suggest that in order for research ethics to adequately address the social role of science it must devote considerable attention to clarifying the nature of the ethical responsibility for realizing social value (Clayton 2003; London 2005).
I have recently completed a pilot study examining the practical aspects of the collaborative partnership and social value ethical principles in Kenya involving 40 in-depth interviews with researchers, policy makers and healthcare managers. The findings suggest that the notion of social value is poorly understood and developed locally. Thus, whereas there is a general acceptance of the need for research to have social value it remains unclear how researchers and funders should be encouraged to consider and plan for achieving it. In addition, it was not clear what mechanisms currently exist or which might need to be created to help translate research findings into improved health. Seen from the perspective of social value the effectiveness of approaches to translate research into practice becomes an ethical issue.
The process of knowledge translation (KT) has a variety of definitions (Estabrooks, Thompson, Lovely, & Hofmeyer, 2006; Lenfant, 2003)). One, the Canadian Institute for Health Research (CIHR) defines it as the exchange, synthesis and ethically sound application of knowledge within a complex system of interactions among researchers and users to accelerate the capture of the benefits of research and improve health through more effective services and products and a strengthened healthcare system (CIHR 2004). It has also been defined, more conceptually, as proceeding from awareness, through acceptance to adoption of research findings (Green & Seifert, 2005). This may involve active exchange of information between researchers who create new knowledge and those who use it. It is apparent however that KT strategies will vary according to the type of research e.g. biomedical, clinical, health services and policy or population health research, and according to the intended users (researchers, front line practitioners, health system managers, policy makers or the general public). Accordingly, ensuring there is collaboration and partnership between the creators and users of research at all stages of the research cycle is fundamental to successful translation (Lavis et al., 2001). This view of knowledge translation is radically different from the traditional view of knowledge transfer from researchers to users that has been labelled the ‘two communities problem’. In this view researchers and policy makers are assumed to inhabit different worlds with a different culture and language (Caplan 1979; Lomas 1997 and Lavis 2001) with KT relying on dissemination practices such as publication in peer reviewed journals or presentation in workshops, which have now been shown to be ineffective in encouraging adoption of research findings (Landry, et al., 2001).
As interest in and concern for the social value of research grows, however, it is clear that guidance will be required to help individuals, institutions and funding agencies to negotiate the myriad ethical, social and policy challenges involved. This PhD research intends to contribute to the debate and maintain a focus on the practical aspects of how the benefits obtained from research can be enhanced.