A principle-based framework for improving health equity in the Champlain region of Ontario, Canada.

The purpose of this column is to present an action-oriented health equity framework derived from Beauchamp and Childress' four ethical principles (ie, autonomy, beneficence, nonmaleficence, and justice) and centred around the specific needs of marginalized and excluded communities of the Champlain region of Ontario. It describes the conceptual underpinnings of the framework, defines its components, and demonstrates how it can be applied. The principle-based health equity framework is a useful tool to reduce health disparities within healthcare organizations; it is designed to promote the incorporation of health equity objectives, strategies, principles, and measurements into healthcare organizations' strategic planning processes and operations.

Evaluation of a cartoon-based knowledge dissemination intervention on scientific and ethical challenges raised by nutrigenomics/nutrigenetics research.

CONTEXT: The push for knowledge translation on the part of health research funding agencies is significant in Canada, and many strategies have been adopted to promote the conversion of knowledge into action. In recent years, an increasing number of health researchers have been studying arts-based interventions to transform knowledge into action. This article reports on the results of an online questionnaire aimed at evaluating the effectiveness of a knowledge dissemination intervention (KDI) conveying findings from a study on the scientific and ethical challenges raised by nutrigenomics-nutrigenetics (NGx) research. The KDI was based on the use of four Web pages combining original, interactive cartoon-like illustrations accompanied by text to disseminate findings to Canadian Research Ethics Boards members, as well as to NGx researchers and researchers in ethics worldwide. METHODS: Between May and October 2012, the links to the Web pages were sent in a personal email to target audience members, one thematic Web page at a time. On each thematic Web page, members of the target audience were invited to answer nine evaluation questions assessing the effectiveness of the KDI on four criteria, (i) acquisition of knowledge; (ii) change in initial understanding; (iii) generation of questions from the findings; and (iv) intent to change own practice. FINDINGS: Response rate was low; results indicate that: (i) content of the four Web pages did not bring new knowledge to a majority of the respondents, (ii) initial understanding of the findings did not change for a majority of NGx researchers and a minority of ethics respondents, (iii) although the KDI did raise questions for respondents, it did not move them to change their practice. CONCLUSIONS: While target end-users may not feel that they actually learned from the KDI, it seems that the findings conveyed encouraged reflection and raised useful and valuable questions for them. Moreover, the evaluation of the KDI proved to be useful to gain knowledge about our target audiences' views since respondents' comments allowed us to improve our understanding of the disseminated knowledge as well as to modify (and hopefully improve) the content of the Web pages used for dissemination.

Family communication following BRCA1/2 genetic testing: a close look at the process.

This study examines the process of communicating BRCA1/2 genetic test results to family members, and the factors influencing disclosure. Twenty-nine semi-structured telephone interviews with BRCA1/2 tested individuals, 4 to 9 years post-notification, were conducted. Our results suggest that individual, familial, relational and socio-medical factors influence the decision to disclose/not disclose genetic test results to family members. These factors are at play in all three communication phases: the Decision-making phase, in which the individual ponders various factors before deciding to disclose test results to family members; the Disclosure phase, in which communication per se takes place; and the Reaction phase, which shapes the participant's subsequent disclosure/non-disclosure decisions. We propose a guiding framework to assist in identifying and evaluating significant factors that might shape the course and outcome of the transmission of genetic information to family members.

Scientists' perspectives on the ethical issues of stem cell research.

This paper describes findings from an ethics education project funded by the Canadian Stem Cell Network (SCN). The project is part of a larger research initiative entitled "The Stem Cell Research Environment: Drawing the Evidence and Experience Together". The ethics education study began with a series of focus groups with SCN researchers and trainees as part of a "needs assessment" effort. The purpose of these discussions was to identify the main ethical issues associated with stem cell (SC) research from the perspective of the stem cell community. This paper will focus on five prominent themes that emerged from the focus group data including: (1) the source of stem cells; (2) the power of stem cells; (3) working within a charged research environment; (4) the regulatory context; and (5) ethics training for scientists. Additional discussions are planned with others involved in Canadian stem cell research (e.g., research ethics board members, policy makers) to supplement initial findings. These assessment results combined with existing bioethics literature will ultimately inform a web-based ethics education module for the SCN. We believe that our efforts are important for those analyzing the ethical, legal, and social issues (ELSI) in this area because our in depth understanding of stem cell researcher perspectives will enable us to develop more relevant and effective education material, which in turn should help SC researchers address the important ethical challenges in their area.

Trust in health research relationships: accounts of human subjects.

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.