Fern Brunger

Science communication reconsidered

As new media proliferate and the publics trust and engagement in science are influenced by industry involvement in academic research, an interdisciplinary workshop provides some recommendations to enhance science communication.

Stem Cell Research Ethics: Consensus Statement on Emerging Issues

This article is a consensus statement by an international interdisciplinary group of academic experts and Canadian policy-makers on emerging ethical, legal and social issues in human embryonic stem cells (hESC) research in Canada. The process of researching consensus included consultations with key stakeholders in hESC research (regulations, stem cell researchers, and research ethics experts), preparation and distribution of background papers, and an international workshop held in Montreal in February 2007 to discuss the papers and debate recommendations. The recommendations provided in the consensus statement focus on issues of immediate relevance to Canadian policy-makers, including informed consent to hESC research, the use of fresh embryos in research, management of conflicts of interest, and the relevance of public opinion research to policy-making.

Ethics, “Vulnerability,” and Feminist Participatory Action Research With a Disability Community

We consider the work of research ethics boards and funding models for research that at times are incompatible with the relationship building required for feminist participatory action research with a disability community. We explore the barriers that emerged for university- and community-based partners as they asserted individual and collective identities, and negotiated boundaries, access, and power relations in the process of designing and conducting research. This critical reflection contributes to our understanding of the structures of academic research funding, ethics approval, and how problematic conceptualizations of vulnerability embedded in the Tri-Council Policy Statement and research ethics board practices impact on relationship building and the research process. Recommendations for change will be helpful to researchers studying disability, those using participatory action research, and individuals serving on ethics review boards.

“Other” Troubles: Deconstructing Perceptions and Changing Responses to Refugees in Canada

Canadian national identity is based on a self-image of humanitarianism and liberality governed by ethical and moral principles of social justice, universal health care and equity for all. However, recent changes to the Interim Federal Health Program (IFHP) demonstrate that the current discourse on refugee policy in Canada is built on a socially constructed image of “the refugee.” Drawing on contemporary refugee literature we look at how refugees are constructed as the ‘Other,’ both nationally and internationally. Using the recent changes to the IFHP as a case example, we demonstrate that the construction of “the refugee” as an Other has informed the cuts to refugee care in Canada. Exposing Othering in Canadian refugee policy is necessary for providing helpful and equitable treatment to refugees in Canada

“What Do They Really Mean by Partnerships?” Questioning the Unquestionable Good in Ethics Guidelines Promoting Community Engagement in Indigenous Health Research

Academics and community members collaborated in research to examine how best to apply ethics guidelines for research involving Indigenous communities in a community with complex and multiple political and cultural jurisdictions. We examined issues of NunatuKavut (Southern Inuit) authority and representation in relation to governance of research in a context where community identity is complex and shifting, and new provincial legislation mandates centralized ethics review. We scrutinize the taken-for-granted assumption of research ethics that community engagement is an unquestionable “good.” We examine the question of whether and how research ethics guidelines and associated assumptions about the value of community engagement may be grounded in, and inadvertently reinforce, ongoing colonialist relations of power. We present findings that community engagement—if done uncritically and in service to ethics guidelines rather than in service to ethical research—can itself cause harm by leading to community fatigue, undermining the community’s ability to be effectively involved in the research, and restricting the community’s ability to have oversight and control over research. We conclude by suggesting that the laudable goal of engaging communities in research requires careful reflection on the appropriate use of resources to operationalize meaningful collaboration.

Making the Decision to Participate in Predictive Genetic Testing for Arrhythmogenic Right Ventricular Cardiomyopathy

This paper describes the experience of predictive genetic testing for Arrhythmogenic Right Ventricular Cardiomyopathy in the context of novel gene discovery. Two approaches to making the decision to engage in genetic testing were apparent: the decision to be tested either (a) develops gradually over time or (b) happens so quickly that it is felt as a “fait accompli.” Six key factors that influenced the particular approach taken by the participants were identified: (1) scientific process—available and relevant predictive genetic test; (2) numerous losses or deaths within the family; (3) physical signs and symptoms of disease; (4) gender; (5) sense of relational responsibility or moral obligation to other family members; and (6) family support. This study found that at risk individuals juxtapose scientific knowledge against their experiential knowledge and the six identified factors in order to make the decision to participate in genetic testing. Recommendations include the creation of a relational space within which to provide psychological counselling and assessment for the six identified factors that shape the decision to engage in predictive genetic testing.

Risk and Representation in Research Ethics The NunatuKavut Experience

This article examines Canadian policy governing the ethics of research involving Indigenous communities. Academics and community members collaborated in research to examine how best to apply the Tri-Council Policy Statement guidelines in a community with complex and multiple political and cultural jurisdictions. We examined issues of NunatuKavut (Southern Inuit) authority and representation in relation to governance of research in a context where community identity is complex and shifting, and new provincial legislation mandates centralized ethics review. We describe the politics of risk—the ways in which collective identity and research risks are co-constructed. Our case study illustrates that collective consent to research must emphasize shifting identity construction in relation to the particular risks and benefits invoked by the research question, to ascertain with which groups or individuals the negotiation of risk should take place in the first place. We conclude by describing a necessary re-imagining of policy governing research ethics involving Indigenous communities.

The evolution of integration: Innovations in clinical skills and ethics in first year medicine

Critical self-reflection, medical ethics and clinical skills are each important components of medical education but are seldom linked in curriculum development. We developed a curriculum that builds on the existing integration of ethics education into the clinical skills course to more explicitly link these three skills. The curriculum builds on the existing integration of clinical skills and ethics in first year medicine. It refines the integration through scheduling changes; adds case studies that emphasise the social, economic and political context of our provinces patient population; and introduces reflection on the “culture of medicine” as a way to have students articulate and understand their own values and moral decision making frameworks. This structured Clinical Skills course is a model for successfully integrating critical self-reflection, reflection on the political, economic and cultural contexts shaping health and healthcare, and moral decision making into clinical skills training.

Guidelines for Teaching Cross-Cultural Clinical Ethics: Critiquing Ideology and Confronting Power in the Service of a Principles-Based Pedagogy.

This paper presents a pedagogical framework for teaching cross-cultural clinical ethics. The approach, offered at the intersection of anthropology and bioethics, is innovative in that it takes on the “social sciences versus bioethics” debate that has been ongoing in North America for three decades. The argument is made that this debate is flawed on both sides and, moreover, that the application of cross-cultural thinking to clinical ethics requires using the tools of the social sciences (such as the critique of the universality of the Euro-American construct of “autonomy”) within (rather than in opposition to) a principles-based framework for clinical ethics. This paper introduces the curriculum and provides guidelines for how to teach cross-cultural clinical ethics. The learning points that are introduced emphasize culture in its relation to power and underscore the importance of viewing both biomedicine and bioethics as culturally constructed.

Matching physicians to newly arrived refugees in a context of physician shortage: innovation through advocacy

Purpose – Access to a continuum of care from a family physician is an essential component of health and wellbeing. Refugees have particular barriers to accessing medical care. The MUN MED Gateway Project is a medical student initiative in partnership with a refugee settlement agency that provides access to and continuity of health care for new refugees, while offering medical students exposure to cross-cultural health care. This paper aims to report on the first six years of the project. Design/methodology/approach – Here the paper reports on: client patient uptake and demographics, health concerns identified through the project, and physician uptake and rates of patient-physician matches. Findings – Results demonstrate that the project integrates refugees into the health care system and facilitates access to medical care. Moreover, it provides learning opportunities for students to practice cross-cultural health care, with high engagement of medical students and high satisfaction by family physicians involved. Originality/value – Research has shown that student run medical clinics may provide less than optimum care to marginalized patients. Transient staff, lack of continuity of care, and limited budgets are some challenges. The MUN MED Gateway Project is markedly different. It connects patients with the mainstream medical system. In a context of family physician shortage, this student-run clinic project provides access to medical care for newly arrived refugees in a way that is effective, efficient, and sustainable.