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Participation in authentic research in the field and online through Community and Citizen Science (CCS) has shown to bring learning benefits to volunteers. In online CCS, available platforms present distinct features, ranging from scaffolding the process of data collection, to supporting data analysis and enabling volunteers to initiate their own studies. What is yet not well understood is how best to design CCS programmes that are educational, inclusive, and accessible by diverse volunteers, including young people and those with limited prior science experiences who are rather few in CCS. In this study, we interviewed 31 young people, aged 7-20 years old, who used iNaturalist, an online biodiversity monitoring platform, and identified how different forms of participation online and in the field facilitated (or inhibited) certain forms of learning, as defined by the Environmental Science Agency framework. Findings revealed that iNaturalist enabled participation of young people including those with limited science experiences and facilitated science learning such as the development of science competence and understanding. A blended learning framework for biodiversity monitoring in CCS is presented as a means to support the development of hybrid, educational, and inclusive CCS programmes for young people.

Contributory science—including citizen and community science—allows scientists to leverage participant-generated data while providing an opportunity for engaging with local community members. Data yielded by participant-generated biodiversity platforms allow professional scientists to answer ecological and evolutionary questions across both geographic and temporal scales, which is incredibly valuable for conservation efforts. The data reported to contributory biodiversity platforms, such as eBird and iNaturalist, can be driven by social and ecological variables, leading to biased data. Though empirical work has highlighted the biases in contributory data, little work has articulated how biases arise in contributory data and the societal consequences of these biases. We present a conceptual framework illustrating how social and ecological variables create bias in contributory science data. In this framework, we present four filters—participation, detectability, sampling and preference—that ultimately shape the type and location of contributory biodiversity data. We leverage this framework to examine data from the largest contributory science platforms—eBird and iNaturalist—in St. Louis, Missouri, the United States, and discuss the potential consequences of biased data. Lastly, we conclude by providing several recommendations for researchers and institutions to move towards a more inclusive field. With these recommendations, we provide opportunities to ameliorate biases in contributory data and an opportunity to practice equitable biodiversity conservation. Read the free Plain Language Summary for this article on the Journal blog.

Previous research shows that processing times on emotion words (both negative and positive) are faster than on non-emotional neutral words. In the current study, we explored how personality traits (the Big Five and the trait emotional intelligence factors) may further influence the processing of emotion versus non-emotion words by conducting two experiments where participants silently read sentences while their eye movements were recorded. The results replicated the facilitative emotion effect and showed that those with higher agreeableness scores had stronger emotion effects on positive words and those with higher extraversion scores, higher openness scores, higher agreeableness scores, lower sociability scores, and higher emotionality scores had stronger emotion effects on negative words. Furthermore, some personality traits also led to different ways that readers approach text, for example, through more risky reading strategies.

Accessibility to gifted programs is related to processes by which students are screened for eligibility and have knowledge of options for participation. Accessibility via websites is related to usability for all users, including those with limited technology or connectivity. The purpose of the present study was to evaluate accessibility and availability of information regarding gifted education for parents of gifted students from historically marginalized student populations. We conducted a content analysis of Florida's 74 district websites to determine accessibility and availability of gifted information. We found a disparity between accessibility based on number of clicks and availability based on embeddedness of information, although quantity of clicks was not necessarily correlated with the availability of information. Our findings led to practical implications and actionable items for educational institutions to address the potential impact of accessibility to gifted identification/program participation for students from underrepresented populations.

Obtaining data without the intervention of a health care provider represents an opportunity to expand understanding of the safety of medications used in difficult-to-study situations, like the first trimester of pregnancy when women may not present for medical care. While it is widely agreed that personal data, and in particular medical data, needs to be protected from unauthorized use, data protection requirements for population-based studies vary substantially by country. For public-private partnerships, the complexities are enhanced. The objective of this viewpoint paper is to illustrate the challenges related to data protection based on our experiences when performing relatively straightforward direct-to-patient noninterventional research via the Internet or telephone in four European countries. Pregnant women were invited to participate via the Internet or using an automated telephone response system in Denmark, the Netherlands, Poland, and the United Kingdom. Information was sought on medications, other factors that may cause birth defects, and pregnancy outcome. Issues relating to legal controllership of data were most problematic; assuring compliance with data protection requirements took about two years. There were also inconsistencies in the willingness to accept nonwritten informed consent. Nonetheless, enrollment and data collection have been completed, and analysis is in progress. Using direct reporting from consumers to study the safety of medicinal products allows researchers to address a myriad of research questions relating to everyday clinical practice, including treatment heterogeneity in population subgroups not traditionally included in clinical trials, like pregnant women, children, and the elderly. Nonetheless, there are a variety of administrative barriers relating to data protection and informed consent, particularly within the structure of a public-private partnership.

Disparities in care, treatment-related toxicity and health-related quality of life (HRQoL) for adolescents and young adults (AYAs, aged 15-39 years) with cancer are under-addressed partly because of limited collection of patient-reported outcomes (PROs) in cancer clinical trials (CCTs). The AYA years include key developmental milestones distinct from younger and older patients, and cancer interrupts attainment of critical life goals. Lack of consensus on a standardized approach to assess HRQoL and treatment-related toxicity in AYA CCTs has limited the ability to improve patient outcomes. The National Cancer Institutes Clinical Trials Network AYA PRO Task Force was assembled to reach consensus on a core set of PROs and foster its integration into AYA CCTs. Eight key considerations for selecting the core PRO AYA battery components were identified: relevance to AYAs; importance of constructs across the age continuum; prioritization of validated measures; availability of measures without licensing fees; availability in multiple languages; applicability to different cancer types and treatments; ability to measure different HRQoL domains and toxicities; and minimized burden on patients and sites. The Task Force used a modified Delphi approach to identify key components of the PRO battery. The Patient-Reported Outcomes Measurement Information System (PROMIS) and the PRO Common Terminology Criteria for Adverse Events Measurement System met all criteria and were selected to assess HRQoL and treatment toxicity, respectively. Investigators are rapidly incorporating the recommendations of the Task Force into AYA trials. Inclusion of a standardized assessment of HRQoL and treatment toxicities in AYA CCTs is a vital first step to develop interventions to improve health outcomes for AYAs diagnosed with cancer.

We investigated youth participation in three Community and Citizen Science (CCS) programs led by natural history museums in out-of-school settings. Using second generation Activity Theory, we looked at repeated participation over time, collecting and then qualitatively analyzing ethnographic fieldnote observations on focal youth participation and components of the activity systems. We found each program provided multiple and unique access points for youth to participate in environmental science. Further, when facilitators emphasized the scientific goals of the programs clearly and repeatedly, youth participation in the scientific processes of the CCS programs deepened. Access to scientific tools, facilitation in using them, and repeatedly applying them in authentic research, enabled youth to participate in different aspects of CCS, from exploring to submitting biological data. Repeated participation in CCS activities provided the opportunities for youth to try the same type of participation multiple times (intensification), as well as provided the opportunity for youth to try different types of participation (diversification). Our findings suggest that repeated participation in authentic scientific research in CCS contexts fosters youth development of new roles and possible development of environmental science identities.

Decrypting the rearrangements that drive mammalian chromosome evolution is critical to understanding the molecular bases of speciation, adaptation, and disease susceptibility. Using 8 scaffolded and 26 chromosome-scale genome assemblies representing 23/26 mammal orders, we computationally reconstructed ancestral karyotypes and syntenic relationships at 16 nodes along the mammalian phylogeny. Three different reference genomes (human, sloth, and cattle) representing phylogenetically distinct mammalian superorders were used to assess reference bias in the reconstructed ancestral karyotypes and to expand the number of clades with reconstructed genomes. The mammalian ancestor likely had 19 pairs of autosomes, with nine of the smallest chromosomes shared with the common ancestor of all amniotes (three still conserved in extant mammals), demonstrating a striking conservation of synteny for ∼320 My of vertebrate evolution. The numbers and types of chromosome rearrangements were classified for transitions between the ancestral mammalian karyotype, descendent ancestors, and extant species. For example, 94 inversions, 16 fissions, and 14 fusions that occurred over 53 My differentiated the therian from the descendent eutherian ancestor. The highest breakpoint rate was observed between the mammalian and therian ancestors (3.9 breakpoints/My). Reconstructed mammalian ancestor chromosomes were found to have distinct evolutionary histories reflected in their rates and types of rearrangements. The distributions of genes, repetitive elements, topologically associating domains, and actively transcribed regions in multispecies homologous synteny blocks and evolutionary breakpoint regions indicate that purifying selection acted over millions of years of vertebrate evolution to maintain syntenic relationships of developmentally important genes and regulatory landscapes of gene-dense chromosomes.

Faith-based communities supporting diverse and underserved communities are increasingly being recognized by researchers as community "anchor institutions" and equitable partners in research engagement. Research suggests that faith-based organizations (FBOs) can promote health and well-being within congregations and throughout communities. This evidence has energized community-academic partnerships to collaboratively support FBOs in plans to improve community wellbeing and health equity, particularly within communities of color. This paper describes the evolution of a community-academic collaboration led by a Full Gospel Midwest Regional Baptist Church where the co-partners professed a commitment to advancing the public good through collaborative governance and shared goal setting in the delivery of an engagement training program. Core features highlighted are: (1) establishing a Community Advisory Board; (2) developing a research engagement training program; and (3) analyses, results, and legacy. Extension of the church-led mission to lead research engagement connects leaders and communities to resources and scientific expertise in support of the data needs and aspirations of faith-based communities. As research-ready partners, faith-based communities have the capacity to function as localized anchors to drive urban health policy and to serve as advocates by being the "voice" in community-driven research engagement for "public good."

There is a need for intervention to support friendship for people living with aphasia. The purpose of this article is to describe a stakeholder engagement process that involved researchers, clinicians, people living with aphasia, and care partners to inform such intervention. Through reflection and firsthand accounts of non-university-based researchers, people not typically represented in the research process, we share details of two main lessons learned throughout the stakeholder engagement journey: (1) accessible engagement and (2) team correspondence. Finally, we describe experiences with use of the Social Convoy Model to support discussion and engagement about friendship and aphasia. We argue that this tool be a consideration in future intervention research in this area to support people with aphasia communicating their friendship priorities and goals. Although the richness of multistakeholder research teams has been documented, we hope that this article provides detail that is not commonly shared thus illuminating the process. We also hope to provide a transparent account of the cost and time required to ensure equity across stakeholder groups.