BackgroundPersonal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research.MethodsA 45-item survey was distributed to a (...) convenience sample of patients at an outpatient clinic in a large urban centre. The survey briefly addressed sociodemographic and illness characteristics. Opinions were sought on the research use of health information and biospecimens including consent preferences.ResultsTwo hundred eleven of 400 distributed surveys were completed. Respondents were generally supportive of medical research and trusting of researchers. Many respondents supported the use of their information and biospecimens for health research and also preferred consent be sought for use of health information and biospecimens. Some supported the use of their information and biospecimens for research without consent. There were significant differences in the opinions people offered regarding the research use of biospecimens compared to health information. Some respondent perspectives about consent were at odds with current regulatory and legal standards.ConclusionsClinical health data and biospecimens are valuable research resources, critical to the advancement of medicine. Use of these data for research requires balancing respect for individual autonomy, privacy and the societal interest in the greater good. Incongruence between some respondent perspectives and the regulatory standards suggest both a need for public education and review of legislation to increase understanding and ensure the public’s trust is maintained. (shrink)

The interpretive and subjective nature of qualitative research has led to growing utilization of arts-based strategies for data collection, analysis and dissemination. The defining characteristic of all such strategies is that they are largely subjective and intended to invoke personal responses in the ‘audience.’ Following that direction, many qualitative researchers are using metaphor to capture themes emerging from their analysis. In this article, we explore ethical aspects of using metaphor in describing results of qualitative health research and illustrate some of (...) the complexities using a case study of research conducted by one of the authors. Our analysis is designed to sensitize researchers and ethics reviewers to some unique ethical issues inherent to this approach towards data analysis and presentation. Issues related to participant dignity, respect and vulnerability led us to suggest that researchers should take these points into consideration in designing their research and seeking informed consent. Metaphors can be linguistic devices, but also conceptual aids that help develop patterns in analysis or that facilitate re-interpretation. However, there is a thin line between artistic licence for better expression and distorting the participants’ actual experience and meanings. Researchers, and reviewers, must be aware of the danger to participant dignity and integrity when aesthetics overshadow actuality. The use of metaphor may also trigger tensions between researchers and participants, especially if member checking is used. The implications of participant withdrawal must be considered and conveyed to ethics reviewers and participants. It is important to have a plan in place for dealing with some of these issues. These should be detailed in the proposal and communicated to participants. Institutional research ethics boards should, on their part, be prepared to ask questions if such details are lacking in the proposal. (shrink)

Background:Scholarly work is needed to develop the conceptual and theoretical understanding of trust to nursing practice. The transition from hospital care to complex pediatric homecare involves nurses in myriad roles, including management and care provision. Complex pediatric homecare transforms children, families, professionals, and communities, but its exact implications are unclear.Research objectives:To conduct an ethical inquiry into the role and responsibilities of nurses in the qualitative experience of adults involved in the hospital-to-home transition of young, ventilator-dependent children.Research design:We followed methods described (...) by Franco Carnevale. We used a sociologically grounded theoretical orientation—trust—to re-interpret qualitative data for an ethical inquiry into a specific facet of that data.Participants and study context:The participants included 26 adults, including 14 nurses, involved in the hospital-to-home transition in a Canadian province. Participants represented family, hospital, home, and government.Ethical considerations:The Conjoint Health Research Ethics Board at the University of Calgary approved this study.Findings:First, the concept and practice of trust was salient to the experience of transition. For example, responsibilities’ allocation between hospital-based professionals to mothers, home-based nurses, and non-professionals necessitated reliance and vulnerability. Second, the consequences of distrust connected to recognized challenges. For example, tensions along rural–urban, medical-family, and professional–personal divide each revealed suspicion and uncertainty that led to isolation and anxiety for all involved. Third, recommendations to improve the experience and mitigate the challenges of transition can be grounded in trust promotion. For example, transition-specific education programs and codes of ethics would promote openness, recognize mutual vulnerability, and advance trust in transition.Conclusions:The challenges to transition evidenced distrust, while trust represents a powerful tool to counter these challenges and their implications. A climate of trust could bridge divides between mothers and professionals; rural and urban professionals; and professionals with differing relationships with the family. (shrink)