There is near universal recognition that human participant protection is both morally and practically essential for all forms of research involving humans. Yet most of the discourse around human participant protection has focussed on norms—rules, regulations and governance arrangements—rather than on the actual effectiveness of these norms in achieving their ends—protecting participants from undue risk and ensuring respectful treatment as well as advancing the generation of useful knowledge. In recent years there has been increasing advocacy for evidence-based human participant protection (...) that would be grounded on the careful investigation of the effects of research on human participants. We offer an analysis of evidence-based protection and then focus on Canadian examples of research on evidence-based protection. We consider the prospects for such research being put into practice in Canada. Finally we connect our remarks to the theme of “the changing landscape of human participant protection.”. (shrink)

Visual research is a fast-growing interdisciplinary field. The flexibility and diversity of visual research methods are seen as strengths by their adherents, yet adoption of such approaches often requires researchers to negotiate complex ethical terrain. The digital technological explosion has also provided visual researchers with access to an increasingly diverse array of visual methodologies and tools that, far from being ethically neutral, require careful deliberation and planning for use. To explore these issues, the Symposium on Exploring Ethical Frontiers of Visual (...) Methods was held at the University of Melbourne, Australia, on 4 March 2014. The symposium was hosted by the Visual Research Collaboratory, a consortium of Australian and Canadian visual researchers, with support from Melbourne Social Equity Institute, University of Melbourne. The symposium represented the culmination of a process to develop a resource outlining principles of ethical practice for visual researchers and ethics committee members, the Guidelines for Ethical Visual Research Methods, which were launched at the event. The Guidelines present a framework for considering ethical matters in visual research, distinguishing six groups of issues united by an overarching theme: confidentiality; minimizing harm; consent; fuzzy boundaries; authorship and ownership; and representation and audiences. (shrink)

The historical antecedents of Garrett Hardin’s “tragedy ofthe commons” are generally understood to lie in the common grazing lands of medieval and post-medieval England. The concept of the commons current in medieval England is significantly different from the modem concept; the English common was not available to the general public but rather only to certain individuals who inherited or were granted the right to use it, and use of the common even by these people was not unregulated. The types and (...) in some cases the numbers of animals each tenant could pasture were limited, based at least partly on a recognition of the limited carrying capacity of the land. The decline of the commons system was the result of a variety of actors having little to do with the system’s inherent worth. Among these factors were widespread abuse of the rules governing the commons, land “reforms” chiefly designed to increase the holdings of a few landowners, improved agricultural techniques, and the effects of the industrial revolution. Thus, the traditional commons system is not an example of an inherently flawed land-use policy, as is widely supposed, but of a policy which succeeded admirably in its time. (shrink)

Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more (...) recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. (shrink)