Health Misinformation and the Power of Narrative Messaging in the Public Sphere

Numerous social, economic and academic pressures can have a negative impact on representations of biomedical research. We review several of the forces playing an increasingly pernicious role in how health and science information is interpreted, shared and used, drawing discussions towards the role of narrative. In turn, we explore how aspects of narrative are used in different social contexts and communication environments, and present creative responses that may help counter the negative trends. As traditional methods of communication have in many ways failed the public, changes in approach are required, including the creative use of narratives

Technology assessment and resource allocation for predictive genetic testing: A study of the perspectives of Canadian genetic health care providers

<p>Abstract</p> <p>Background</p> <p>With a growing number of genetic tests becoming available to the health and consumer markets, genetic health care providers in Canada are faced with the challenge of developing robust decision rules or guidelines to allocate a finite number of public resources. The objective of this study was to gain Canadian genetic health providers' perspectives on factors and criteria that influence and shape resource allocation decisions for publically funded predictive genetic testing in Canada.</p> <p>Methods</p> <p>The authors conducted semi-structured interviews with 16 senior lab directors and clinicians at publically funded Canadian predictive genetic testing facilities. Participants were drawn from British Columbia, Alberta, Manitoba, Ontario, Quebec and Nova Scotia. Given the community sampled was identified as being relatively small and challenging to access, purposive sampling coupled with snowball sampling methodologies were utilized.</p> <p>Results</p> <p>Surveyed lab directors and clinicians indicated that predictive genetic tests were funded provincially by one of two predominant funding models, but they themselves played a significant role in how these funds were allocated for specific tests and services. They also rated and identified several factors that influenced allocation decisions and patients' decisions regarding testing. Lastly, participants provided recommendations regarding changes to existing allocation models and showed support for a national evaluation process for predictive testing.</p> <p>Conclusion</p> <p>Our findings suggest that largely local and relatively ad hoc decision making processes are being made in relation to resource allocations for predictive genetic tests and that a more coordinated and, potentially, national approach to allocation decisions in this context may be appropriate.</p

Reflections on Perceptions of promise : Biotechnology, Society and Art

"Perceptions of Promise: Biotechnology, Society and Art is an interdisciplinary and collaborative project that brings together a group of internationally recognized artists and social commentators (e.g. philosophers, sociologists, legal scholars, scientists) in order to produce a body of original art work and accompanying essays exploring the complex legal, ethical and social issues associated with advancements made in life science technologies with a particular focus on stem cell research. The artists featured in this publication participated in the original Perception of Promise exhibition, then continued to draw on the interdisciplinary experiences from the project for motivation in their studio practice." -- page 5

Perceptions of promise : Biotechnology, Society and Art

"As a collaboration between scientists, scholars and artists, Perceptions of Promise: Biotechnology, Society and Art will challenge viewers to reconsider both the meanings and the pssibilities of biotechnology and stem cell research, and will inspire them to create and use as many tools as necessary to help shape the language they choose to make intellectual and/or emotional sense of it." -- page 7

Health Misinformation and the Power of Narrative Messaging in the Public Sphere

Numerous social, economic and academic pressures can have a negative impact on representations of biomedical research. We review several of the forces playing an increasingly pernicious role in how health and science information is interpreted, shared and used, drawing discussions towards the role of narrative. In turn, we explore how aspects of narrative are used in different social contexts and communication environments, and present creative responses that may help counter the negative trends. As traditional methods of communication have in many ways failed the public, changes in approach are required, including the creative use of narratives.De nombreuses pressions sociales, économiques et académiques peuvent avoir un impact négatif sur les représentations de la recherche biomédicale. Nous passons en revue plusieurs des éléments qui jouent un rôle de plus en plus pernicieux dans l’interprétation, le partage et l’utilisation de l’information sur la santé et les sciences; ce qui nous mène à nous intéresser au rôle du récit. Par conséquent, nous explorons comment les aspects narratifs sont utilisés dans divers contextes sociaux et environnements de communication, puis présentons des réponses novatrices susceptibles de contribuer à contrer les tendances négatives. Comme les méthodes de communication traditionnelles ont échoué à bien des égards auprès du public, des changements d’approche s’imposent, dont l’utilisation novatrice des récits

Policy recommendations for addressing privacy challenges associated with cell-based research and interventions

Background: The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies and databases used for re-identification become affordable and more sophisticated. Policies that require ongoing linkage of cell lines to donors’ clinical information for research and regulatory purposes, and existing practices that limit research participants’ ability to control what is done with their genetic data, amplify the privacy concerns. Discussion: To date, the privacy issues associated with cell-based research and interventions have not received much attention in the academic and policymaking contexts. This paper, arising out of a multi-disciplinary workshop, aims to rectify this by outlining the issues, proposing novel governance strategies and policy recommendations, and identifying areas where further evidence is required to make sound policy decisions. The authors of this paper take the position that existing rules and norms can be reasonably extended to address privacy risks in this context without compromising emerging developments in the research environment, and that exceptions from such rules should be justified using a case-by-case approach. In developing new policies, the broader framework of regulations governing cell-based research and related areas must be taken into account, as well as the views of impacted groups, including scientists, research participants and the general public. Summary: This paper outlines deliberations at a policy development workshop focusing on privacy challenges associated with cell-based research and interventions. The paper provides an overview of these challenges, followed by a discussion of key themes and recommendations that emerged from discussions at the workshop. The paper concludes that privacy risks associated with cell-based research and interventions should be addressed through evidence-based policy reforms that account for both well-established legal and ethical norms and current knowledge about actual or anticipated harms. The authors also call for research studies that identify and address gaps in understanding of privacy risks.Population and Public Health (SPPH), School ofOther UBCNon UBCMedicine, Faculty ofReviewedFacult