A typology of community and stakeholder engagement based on documented examples in the field of novel vector control.

BackgroundDespite broad consensus on the importance of community and stakeholder engagement (CSE) for guiding the development, regulation, field testing, and deployment of emerging vector control technologies (such as genetically engineered insects), the types of activities pursued have varied widely, as have the outcomes. We looked to previous CSE efforts for clarity about appropriate methods and goals. Our analysis yielded a typology of CSE, and related vocabulary, that describes distinctions that funders, organizers, and scholars should make when proposing or evaluating CSE.MethodsWe compiled available formal documentation of CSE projects, starting with projects mentioned in interviews with 17 key informants. Major features of these examples, including the initiators, target groups, timing, goals, and methods were identified using qualitative coding. Based on these examples, subcategories were developed for a subset of features and applied to the identified cases of CSE in the documents. Co-occurrence of subcategorized features was examined for patterns.ResultsWe identified 14 documented examples CSE projects, which were comprised of 28 distinct CSE activities. We found no clear patterns with respect to timing. However, we found that grouping examples according to whether initiators or targets could enact the immediate desired outcome could help to clarify relationships between goals, methods, and targets.ConclusionBased on this analysis, we propose a typology that distinguishes three categories of CSE: engagement to inquire -where initiators are empowered to act on information collected through engagement with target groups; engagement to influence -where initiators engage to affect the actions of already-empowered target groups; and engagement to involve -where initiators engage to delegate authority to target groups. The proposed typology can serve as a guide for establishing the goals, identifying appropriate methods, and evaluating and reporting CSE projects by directing attention to important questions to be asked well before determining who to engage and how

Disposition toward privacy and information disclosure in the context of emerging health technologies.

ObjectiveWe sought to present a model of privacy disposition and its development based on qualitative research on privacy considerations in the context of emerging health technologies.Materials and methodsWe spoke to 108 participants across 44 interviews and 9 focus groups to understand the range of ways in which individuals value (or do not value) control over their health information. Transcripts of interviews and focus groups were systematically coded and analyzed in ATLAS.ti for privacy considerations expressed by respondents.ResultsThree key findings from the qualitative data suggest a model of privacy disposition. First, participants described privacy related behavior as both contextual and habitual. Second, there are motivations for and deterrents to sharing personal information that do not fit into the analytical categories of risks and benefits. Third, philosophies of privacy, often described as attitudes toward privacy, should be classified as a subtype of motivation or deterrent.DiscussionThis qualitative analysis suggests a simple but potentially powerful conceptual model of privacy disposition, or what makes a person more or less private. Components of privacy disposition are identifiable and measurable through self-report and therefore amenable to operationalization and further quantitative inquiry.ConclusionsWe propose this model as the basis for a psychometric instrument that can be used to identify types of privacy dispositions, with potential applications in research, clinical practice, system design, and policy

Trauma Surveillance in Cape Town, South Africa: An Analysis of 9236 Consecutive Trauma Center Admissions.

PublishedJournal ArticleResearch Support, Non-U.S. Gov'tThis is the final version of the article. Available from American Medical Association via the DOI in this record.IMPORTANCE: Trauma is a leading cause of death and disability worldwide. In many low- and middle-income countries, formal trauma surveillance strategies have not yet been widely implemented. OBJECTIVE: To formalize injury data collection at Groote Schuur Hospital, the chief academic hospital of the University of Cape Town, a level I trauma center, and one of the largest trauma referral hospitals in the world. DESIGN, SETTING, AND PARTICIPANTS: This was a prospective study of all trauma admissions from October 1, 2010, through September 30, 2011, at Groote Schuur Hospital. A standard admission form was developed with multidisciplinary input and was used for both clinical and data abstraction purposes. Analysis of data was performed in 3 parts: demographics of injury, injury risk by location, and access to and maturity of trauma services. Geographic information science was then used to create satellite imaging of injury "hot spots" and to track referral patterns. Finally, the World Health Organization trauma system maturity index was used to evaluate the current breadth of the trauma system in place. MAIN OUTCOMES AND MEASURES: The demographics of trauma patients, the distribution of injury in a large metropolitan catchment, and the patterns of injury referral and patient movement within the trauma system. RESULTS: The minimum 34-point data set captured relevant demographic, geographic, incident, and clinical data for 9236 patients. Data field completion rates were highly variable. An analysis of demographics of injury (age, sex, and mechanism of injury) was performed. Most violence occurred toward males (71.3%) who were younger than 40 years of age (74.6%). We demonstrated high rates of violent interpersonal injury (71.6% of intentional injury) and motor vehicle injury (18.8% of all injuries). There was a strong association between injury and alcohol use, with alcohol implicated in at least 30.1% of trauma admissions. From a systems standpoint, the data suggest a mature pattern of referral consistent with the presence of an inclusive trauma system. CONCLUSIONS AND RELEVANCE: The implementation of injury surveillance at Groote Schuur Hospital improved insights about injury risk based on demographics and neighborhood as well as access to service based on patterns of referral. This information will guide further development of South Africa's already advanced trauma system.This work was supported by the Canadian Institute for Health Research and the Social Sciences and Humanities Research Council

The coalition for conservation genetics: working across organizations to build capacity and achieve change in policy and practice

The Coalition for Conservation Genetics (CCG) brings together four eminentorganizations with the shared goal of improving the integration of geneticinformation into conservation policy and practice. We provide a historicalcontext of conservation genetics as a field and reflect on current barriers toconserving genetic diversity, highlighting the need for collaboration acrosstraditional divides, international partnerships, and coordinated advocacy. Wethen introduce the CCG and illustrate through examples how a coalitionapproach can leverage complementary expertise and improve the organiza-tional impact at multiple levels. The CCG has proven particularly successfulat implementing large synthesis-type projects, training early-career scientists,and advising policy makers. Achievements to date highlight the potential forthe CCG to make effective contributions to practical conservation policy andmanagement that no one“parent”organization could achieve on its own.Finally, we reflect on the lessons learned through forming the CCG, and ourvision for the futur

A Deleterious Mutation in DNAJC6 Encoding the Neuronal-Specific Clathrin-Uncoating Co-Chaperone Auxilin, Is Associated with Juvenile Parkinsonism

Parkinson disease is caused by neuronal loss in the substantia nigra which manifests by abnormality of movement, muscle tone, and postural stability. Several genes have been implicated in the pathogenesis of Parkinson disease, but the underlying molecular basis is still unknown for ∼70% of the patients. Using homozygosity mapping and whole exome sequencing we identified a deleterious mutation in DNAJC6 in two patients with juvenile Parkinsonism. The mutation was associated with abnormal transcripts and marked reduced DNAJC6 mRNA level. DNAJC6 encodes the HSP40 Auxilin, a protein which is selectively expressed in neurons and confers specificity to the ATPase activity of its partner Hcs70 in clathrin uncoating. In Auxilin null mice it was previously shown that the abnormally increased retention of assembled clathrin on vesicles and in empty cages leads to impaired synaptic vesicle recycling and perturbed clathrin mediated endocytosis. Endocytosis function, studied by transferring uptake, was normal in fibroblasts from our patients, likely because of the presence of another J-domain containing partner which co-chaperones Hsc70-mediated uncoating activity in non-neuronal cells. The present report underscores the importance of the endocytic/lysosomal pathway in the pathogenesis of Parkinson disease and other forms of Parkinsonism

UVB-Induced Tumor Heterogeneity Diminishes Immune Response in Melanoma

Although clonal neo-antigen burden is associated with improved response to immune therapy, the functional basis for this remains unclear. Here we study this question in a novel controlled mouse melanoma model that enables us to explore the effects of intra-tumor heterogeneity (ITH) on tumor aggressiveness and immunity independent of tumor mutational burden. Induction of UVB-derived mutations yields highly aggressive tumors with decreased anti-tumor activity. However, single-cell-derived tumors with reduced ITH are swiftly rejected. Their rejection is accompanied by increased T cell reactivity and a less suppressive microenvironment. Using phylogenetic analyses and mixing experiments of single-cell clones, we dissect two characteristics of ITH: the number of clones forming the tumor and their clonal diversity. Our analysis of melanoma patient tumor data recapitulates our results in terms of overall survival and response to immune checkpoint therapy. These findings highlight the importance of clonal mutations in robust immune surveillance and the need to quantify patient ITH to determine the response to checkpoint blockade

The New Runner's High? Examining Relationships Between Cannabis Use and Exercise Behavior in States With Legalized Cannabis

Scientific literature examining cannabis use in the context of health behaviors, such as exercise engagement, is extremely sparse and has yielded inconsistent findings. This issue is becoming increasingly relevant as cannabis legalization continues, a situation that has been associated with increased initiation of use among adults, and increased potency of available products in legalized states. Physical activity is among the most important health behaviors, but many Americans do not meet minimum exercise recommendations for healthy living. Common issues surrounding low exercise rates include inadequate enjoyment of and motivation to exercise, and poor recovery from exercise. It is unclear whether cannabis use shortly before and/or after exercise impacts these issues, and whether this co-use affects exercise performance. The present online survey study examines attitudes and behaviors regarding cannabis use with exercise among adult cannabis users living in states with full legal access (N = 605). Results indicated that the majority (81.7%) of participants endorsed using cannabis concurrently with exercise, and those who did tended to be younger and more likely to be males (p < 0.0005 for both). Even after controlling for these differences, co-users reported engaging in more minutes of aerobic and anaerobic exercise per week (p < 0.01 and p < 0.05, respectively). In addition, the majority of participants who endorsed using cannabis shortly before/after exercise reported that doing so enhances their enjoyment of and recovery from exercise, and approximately half reported that it increases their motivation to exercise. This study represents an important step in clarifying cannabis use with exercise among adult users in states with legal cannabis markets, and provides guidance for future research directions

Bringing together approaches to reporting on within species genetic diversity

1. Genetic diversity is one of the three main levels of biodiversity recognised in the Convention on Biological Diversity (CBD). Fundamental for species adaptation to environmental change, genetic diversity is nonetheless under-reported within global and national indicators. When it is reported, the focus is often narrow and confined to domesticated or other commercial species. 2. Several approaches have recently been developed to address this shortfall in reporting on genetic diversity of wild species. While multiplicity of approaches is helpful in any development process, it can also lead to confusion among policy makers and heighten a perception that conservation genetics is too abstract to be of use to organisations and governments. 3. As the developers of five of the different approaches, we have come together to explain how various approaches relate to each other and propose a scorecard, as a unifying reporting mechanism for genetic diversity. 4. Policy implications. We believe the proposed combined approach captures the strengths of its components and is practical for all nations and subnational governments. It is scalable and can be used to evaluate species conservation projects as well as genetic conservation projects.ISSN:0021-8901ISSN:1365-266

The New Runner's High? Examining Relationships Between Cannabis Use and Exercise Behavior in States With Legalized Cannabis

Scientific literature examining cannabis use in the context of health behaviors, such as exercise engagement, is extremely sparse and has yielded inconsistent findings. This issue is becoming increasingly relevant as cannabis legalization continues, a situation that has been associated with increased initiation of use among adults, and increased potency of available products in legalized states. Physical activity is among the most important health behaviors, but many Americans do not meet minimum exercise recommendations for healthy living. Common issues surrounding low exercise rates include inadequate enjoyment of and motivation to exercise, and poor recovery from exercise. It is unclear whether cannabis use shortly before and/or after exercise impacts these issues, and whether this co-use affects exercise performance. The present online survey study examines attitudes and behaviors regarding cannabis use with exercise among adult cannabis users living in states with full legal access (N = 605). Results indicated that the majority (81.7%) of participants endorsed using cannabis concurrently with exercise, and those who did tended to be younger and more likely to be males (p &lt; 0.0005 for both). Even after controlling for these differences, co-users reported engaging in more minutes of aerobic and anaerobic exercise per week (p &lt; 0.01 and p &lt; 0.05, respectively). In addition, the majority of participants who endorsed using cannabis shortly before/after exercise reported that doing so enhances their enjoyment of and recovery from exercise, and approximately half reported that it increases their motivation to exercise. This study represents an important step in clarifying cannabis use with exercise among adult users in states with legal cannabis markets, and provides guidance for future research directions.</p

Global commitments to conserving and monitoring genetic diversity are now necessary and feasible

Global conservation policy and action have largely neglected protecting and monitoring genetic diversity—one of the three main pillars of biodiversity. Genetic diversity (diversity within species) underlies species’ adaptation and survival, ecosystem resilience, and societal innovation. The low priority given to genetic diversity has largely been due to knowledge gaps in key areas, including the importance of genetic diversity and the trends in genetic diversity change; the perceived high expense and low availability and the scattered nature of genetic data; and complicated concepts and information that are inaccessible to policymakers. However, numerous recent advances in knowledge, technology, databases, practice, and capacity have now set the stage for better integration of genetic diversity in policy instruments and conservation efforts. We review these developments and explore how they can support improved consideration of genetic diversity in global conservation policy commitments and enable countries to monitor, report on, and take action to maintain or restore genetic diversity