Recent approaches to the new genetics stress the importance of placing hereditary risk within the context of familial beliefs and dynamics. Nonetheless, few empirical studies on predictive genetic testing have explored the meaning and significance of hereditary risk within everyday life. Drawing upon in-depth interviews with 21 families, this paper examines the social construction of hereditary risk for one adult onset disorder, Huntington Disease. Highlighting the social, biographical and temporal factors that families consider when discussing risk and its modification through predictive genetic testing, we find that Mendelian theories of inheritance seldom provide an adequate framework. Such objectified knowledge makes sense on an abstract level but is ultimately inadequate for describing the fluctuating relevance of risk as it develops within the nexus of familial relations.
The use of artistic forms as an alternative means for representing research findings is gaining acceptance in the research community. There are, however, important yet unresolved and even contentious issues arising from these new applications of the arts. These include concerns about the level of expertise required to effectively utilize the arts in research, the appropriateness of various methods of creating artworks and the desirability of identifying criteria for assessing arts-based contributions. Centring on the question of criteria for the creation and assessment of arts-based works, we note that there are, at present, few salient guidelines. Drawing upon our experience in conducting a pilot project employing arts-based methods of representing research findings, we propose a Guiding Arts-Based Research Assessment (GABRA) meta-framework for assessing the quality and effectiveness of utilizing the arts for knowledge dissemination. This overarching framework incorporates normative, substantive and performative aspects of arts-based methods of representing research findings.
The field of arts and health is rapidly gaining momentum in Canada despite the challenges of integration across a vast geography, two official languages and multiple interdisciplinary cultures. Although the field is young, there is a solid foundation of innovative work and great enthusiasm on the part of diverse practitioners about the field's salience and impact. This article provides an overview of the arts and health in Canada and considers work that spans health policy, healthcare practice, individual and community health promotion, health professional education and arts-based health research. A final section offers reflections and recommendations on arts and health in Canada. We provide an online appendix through the journal's website that refers the interested reader to Canadian programs, resources, networks and other materials on the arts and health.
There is some evidence that in animal models of acute ischaemic stroke, combinations of neuroprotective agents might be more efficacious than the same agents administered alone. Hence, we developed pragmatic, empirical criteria based on therapeutic target, cost, availability, efficacy, administration, and safety to select drugs for testing in combination in animal models of acute stroke. Magnesium sulphate, melatonin, and minocycline were chosen from a library of neuroprotective agents, and were tested in a more 'realistic' model favoured by the STAIR (Stroke Therapy Academic Industry Roundtable). Outcome was assessed with infarct volume, neurologic score, and two newly developed scales measuring general health and physiologic homeostasis. Owing to the failure to achieve neuroprotection in aged, hypertensive animals with drug delivery at 3 hours, the bar was lowered in successive experiments to determine whether neuroprotection could be achieved under conditions more conducive to recovery. Testing in younger animals showed more favourable homeostasis and general health scores than did testing in older animals, but infarct volume and neurologic scores did not differ with age, and treatment efficacy was again not shown. Testing with shorter occlusions resulted in smaller infarct volumes; nevertheless, treatment efficacy was still not observed. It was concluded that this combination, in these stroke models, was not effective.
Background-Sociological understandings of chronic illness have revealed tensions and complexities around help-seeking. Although ethics underpins healthcare, its application in the area of chronic illness is limited. Here we apply an ethical framework to interview accounts and identify ethical challenges in the early rheumatoid arthritis (RA) experience.
TRUST IS FUNDAMENTAL in health research, yet there is little empirical evidence that explores the meaning of trust from the perspective of human subjects. The analysis presented here focuses on how human subjects talked about trust in the in-depth interviews. It emerged from the accounts that trust could not be assumed in the research setting, rather it was portrayed as a dynamic concept, built and easily broken, characterized by reciprocity and negotiation. Human subjects were ambivalent about who, when, what, and how much to trust in the research endeavor. This paper adds a fresh perspective to the literature on trust, and so offers a currently neglected, and little understood dimension to the discourse around health research ethics.
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