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2016 Conference

Abstract Number: ETH-06 | ID: 4813

Ethical and Philosophical Dimensions of Participatory Epidemiology

Colon L Soskolne*, University of Canberra, Australia, colin.soskolne@ualberta.ca;
Participatory epidemiology uses participatory methods, premised on community engagement, to address epidemiological questions. Participatory methods give stakeholders a role in shaping programmes for both public health and research. One advantage of securing community involvement in the oversight and production of research is that the translation of the research into policy is considered more likely by virtue of community buy-in from the inception.
The ISEE 2012 Ethics Guidelines address ethical dimensions of community engagement. They call for stakeholder engagement by budgeting for their meaningful involvement, including public health agencies, industry and others with an interest in the design, conduct, analysis and dissemination of research. Their roles should be agreed upon ahead of time. Community partnerships are called for to include, from the formal design stage through completion of the study, representatives of those groups who are knowledgeable and are affected by the issue being investigated. The researcher’s task is to ensure, whenever feasible, that community input throughout the research process is included in a partnership capacity with the principal investigator.
To understand information of uncertain biological significance, researchers must strive to ensure that members of the community understand that there may be uncertainty associated with the implications or interpretation of the measures being evaluated, including results of genetic monitoring, markers of exposure, and physiological changes of uncertain biological significance.
In communications with participants, research will be seen as an on-going and cumulative process. Findings and information vital to public health should be communicated to stakeholders in a timely, clear, comprehensive, understandable and responsible manner, in a format appropriate the understanding of the specific audience.
Ethical dimensions above will be drawn upon to engage the audience and facilitate discussion.