BackgroundThe management of pandemic influenza creates public health challenges.An ethical framework, 'Stand on Guard for Thee: ethical considerations in pandemic influenza preparedness' that served as a template for the World Health Organization's global consultation on pandemic planning, was transformed into a survey administered to a random sample of 500 Canadians to obtain opinions on key ethical issues in pandemic preparedness planning.MethodsAll framework authors and additional investigators created items that were pilot-tested with volunteers of both sexes and all socioeconomic strata. Surveys were telephone administered with random sampling achieved via random digit dialing (RDD). Eligible participants were adults, 18 years or older, with per province stratification equaling provincial percent of national population. Descriptive results were tabulated and logistic regression analyses were used to assess whether demographic factors were significantly associated with outcomes.Results5464 calls identified 559 eligible participants of whom 88.5% completed surveys. Over 90% of subjects agreed the most important goal of pandemic influenza preparations was saving lives, with 41% endorsing saving lives solely in Canada and 50% endorsing saving lives globally as the highest priority. Older age (OR = 8.51, p < 0.05) and current employment (OR = 9.48, p < 0.05) were associated with an endorsement of saving lives globally as highest priority. About 90% of respondents supported the obligation of health care workers to report to work and face influenza pandemic risks excepting those with a serious health condition that increased risks. Over 84% supported the government's provision of disability insurance and death benefits for health care workers facing elevated risk. Strong majorities favored stocking adequate protective antiviral dosages for all Canadians (92%) and, if effective, influenza vaccinations (95%). Over 70% agreed Canada should provide international assistance to poorer countries for pandemic preparation, even if resources for Canadians were reduced. While 92% of this group, believed provision should be 7 to 10% of all resources generated, 43% believed the provision should be greater than 10%.ConclusionsResults suggest trust in public health officials to make difficult decisions, providing emphasis on reciprocity and respect for individual rights.

Purpose: Despite the public health successes of newborn bloodspot screening, uncertainty associated with variant forms of primary screening targets has led to discrepancies in medical management. This study explored health-care providers' approaches to managing atypical forms of inherited metabolic diseases (IMDs) in the absence of evidence-based guidelines.Methods: Semistructured telephone interviews were conducted with metabolic specialists. 3-Methylcrotonyl CoA deficiency and variant forms of phenylketonuria, biotinidase deficiency, and fatty acid oxidation disorders were considered. Data were analyzed inductively and deductively using a novel taxonomy of uncertainty.Results: Health-care providers (n = 12) navigate diagnostic, prognostic, and therapeutic challenges of uncertainty while interpreting patient and family attitudes, preferences, and ideas in the care of children with these result types. Participants explained the limits of classifying mild and atypical metabolic phenotypes.Participants also described the challenge of finding balance between cautious care and overmedicalization. Developing consistent care plans and honest communication with families were perceived as effective strategies when navigating uncertainty.Conclusion: Providers' experiences suggest a need for transparent and accessible guidelines that account for challenges associated with uncertainty generated by screening. Timely consideration of this challenge is warranted with increasing emergence of genotype-first approaches to screening.Genetics in Medicine (2020) 22:566-573; https://doi.

RE: Applying the ICMJE authorship criteria to operational research in low-income countries: the need to engage programme managers and policy makers by Zachariah et al. (2013) TMIH 18, pp. 1025-1028 Dear Sirs,We thank the editors of the TMIH for their recent response (Cairncross et al. 2013) to our editorial (Zachariah et al. 2013). We salute the pioneering and passionate position of TMIH in encouraging researchers from developing countries to be involved and recognised in co-authorship (Groener 2004). We also appreciate the positive recognition of operational research as a science that can build theories and seek truth similar to academic research. We thus tend to agree with the editors' first point that we had artificially separated operational research from academic research but would now see it as a continuum from pure 'academic' research to more practical 'field or operational research'. They both attempt to find the 'truth' in their respective contexts.However, we feel that there has been a misinterpretation of one of the key themes of our editorial, which we wish to clarify. The essence of our study was not to ask for a change or exemption from existing ICMJE criteria, but to apply them in a manner that is engaging and inclusive of programme managers and policy makers. The editors insist that all authors should be able to defend the intellectual content of the whole published work, and we agree with this full-heartedly. On the other hand, we have been misinterpreted as stating that programme managers and policy makers should only fulfil the first ICMJE criterion by being involved in the conception, design and granting permission for the study to become authors. We advocated and continue to do so, that programme managers and policy makers must also fulfil the second and third criteria by critically reviewing the article and signing off on the final version to be published, thereby indicating their willingness to defend its intellectual content. By so doing, their involvement does fulfil all three ICMJE criteria and is more than a 'research per diem'.The editors also suggest that programme managers and policy makers should promote and actively participate in operational research so as to inform decision-making. We again advocate that their participation as authors in the manner that we have outlined not only fulfils ICMJE criteria but, importantly, also increases the likelihood that the research findings will be used to change and improve policies and practice. Ownership of study results, based on active participation in operational research, is a powerful incentive to use those results. This is in contrast to many well-conceived research studies, which languish in the in-boxes of disinterested, harried managers.In conclusion, we have not proposed to relax the criteria for study authorship or that granting permission alone should constitute authorship. Instead, we ask researchers to proactively engage programme managers and policy makers as co-authors, from conception of the idea through to publication, so t...