The scholarship on responsible research and innovation (RRI) aims to align the processes and outcomes of innovation with societal values by involving a broad range of stakeholders from a very early stage. Though this scholarship offers a new lens to consider the challenges new health technologies raise for health systems around the world, there is a need to define the dimensions that specifically characterise responsible innovation in health (RIH). The present article aims to introduce an integrative RIH framework drawing on the RRI literature, the international literature on health systems as well as specific bodies of knowledge that shed light on key dimensions of health innovations. Combining inductive and deductive theory-building strategies and concomitant with the development of a formal tool to assess the responsibility of innovations, we developed a framework that is comprised of nine dimensions organised within five value domains, namely population health, health system, economic, organisational and environmental. RIH provides health and innovation policy-makers with a common framework that supports the development of innovations that can tackle significant system-level challenges, including sustainability and equity.
10 November 2005 in Journal of Nursing Scholarship
The COVID-19 pandemic has brought the long-standing vulnerability of the medical product supply chain into sharp focus. Global shortages of medical products accompanied the global spread of the disease, joined by high prices, the proliferation of suspect dealers and dramatic interventions by governments, philanthropy and industry in oftentimes-unsuccessful attempts to secure solutions.
Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. Moreover, we argue that there is fundamental confusion about the notion of "research results," specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity. Even where policy guidance and scholarly commentary have been most forceful in support of an ethical imperative to disclose research results, ambiguity regarding what is to be disclosed confounds ethical action.
17 July 2013 in European Journal of Human Genetics