Genetic testing technologies are rapidly moving from the research laboratory to the market place. Very little scholarship considers the implications of private genetic testing for a public health care system such as Canada’s. It is critical to consider how and if these tests should be marketed to, and purchased by, the public. It is also imperative to evaluate the extent to which genetic tests are or should be included in Canada’s public health care system, and the impact of allowing a (...) two-tiered system for genetic testing. A series of threshold tests are presented as ways of clarifying whether a genetic test is morally appropriate, effective and safe, efficient and appropriate for public funding and whether private purchase poses special problems and requires further regulation. These thresholds also identify the research questions around which professional, public and policy debate must be sustained: What is a morally acceptable goal for genetic services? What are the appropriate benefits? What are the risks? When is it acceptable that services are not funded under health care? And how can the harms of private access be managed? (shrink)

Les recherches scientifiques sur la COVID-19 sont à la fois menées et diffusées à une cadence effrénée. Bien qu’il soit inspirant de voir la communauté de la recherche répondre avec autant de vigueur à la crise causée par la pandémie, toute cette activité a par ailleurs engendré un chaos de mauvaises données, de résultats contradictoires et de manchettes exagérées. Alors que la polarisation, la déformation et la médiatisation des résultats scientifiques s’intensifient chaque jour, les inquiétudes se font de plus en (...) plus sentir quant à la perspective que la science pertinente soit présentée au public d’une manière qui puisse causer de la confusion, créer de fausses attentes et éroder la confiance du public. Dans cette note, nous explorons les principaux enjeux associés à la présentation de la science dans le contexte de la pandémie de la COVID-19. Plusieurs de ces enjeux ne sont pas nouveaux. Mais la pandémie de la COVID-19 a braqué les projecteurs sur le processus de la recherche biomédicale et a amplifié les ramifications néfastes des problèmes de communication publique. Nous devons faire mieux. À ce titre, nous conclurons ce rapport en formulant dix recommandations qui s’adressent aux acteurs clés qui interviennent dans la communication de la science sur la COVID-19, notamment les gouvernements, les bailleurs de fonds, les universités, les éditeurs, les médias et les communautés de recherche. (shrink)

COVID science is being both done and circulated at a furious pace. While it is inspiring to see the research community responding so vigorously to the pandemic crisis, all this activity has also created a churning sea of bad data, conflicting results, and exaggerated headlines. With representations of science becoming increasingly polarized, twisted and hyped, there is growing concern that the relevant science is being represented to the public in a manner that may cause confusion, inappropriate expectations, and the erosion (...) of public trust. Here we explore some of the key issues associated with the representations of science in the context of the COVID-19 pandemic. Many of these issues are not new. But the COVID-19 pandemic has placed a spotlight on the biomedical research process and amplified the adverse ramifications of poor public communication. We need to do better. As such, we conclude with ten recommendations aimed at key actors involved in the communication of COVID-19 science, including government, funders, universities, publishers, media and the research communities. (shrink)