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The New Borderland: A Mixed-Methods Examination of Teacher Perceptions of Intelligence, Race, and Socioeconomic Status in Relation to Behavior Genetics
Behavior genetics argues intelligence and educational attainment are highly heritable (genetically influenced) and polygenic (influenced by many genes) traits. Researchers in this field have moved beyond identifying whether and how much genes influence the manifestation of a given outcome to trying to pinpoint the genetic markers that help predict them. In more recent years, behavior genetics research has attempted to cross-over into the field of education, looking to play a role in the construction of policy and the implementation of curriculum. This dissertation explores American teacher understandings of intelligence, race, and socioeconomic status in relation to genetics. The convergent parallel mixed-methods research design interprets findings from focus groups, interviews, and surveys through the notion of ‘discriminate biopower’–a theoretical framework that combines intersectionality with biopower. Findings from this study suggest that US teachers believe children differ genetically and see genetics playing a role in a student’s ability and race. Furthermore, teachers are open to learning more about the inclusion of genetics research in education policy. At the same time, however, teachers are wary of incorporating behavior genetics findings into education policy within a context where economic and racial segregation continue to dictate who gains access to resource and opportunities
Barriers to diverse clinical trial participation in Duchenne muscular dystrophy: Engaging Hispanic/Latina caregivers and health professionals
Abstract Background Despite the increasing availability of clinical trials in Duchenne muscular dystrophy, racial/ethnic minorities and other populations facing health disparities remain underrepresented in clinical trials evaluating products for Duchenne. We sought to understand the barriers faced by Hispanic/Latino families specifically and underrepresented groups more generally to clinical trial participation in Duchenne. Methods We engaged two participant groups: Hispanic/Latino caregivers of children with Duchenne in the US, including Puerto Rico, and health professionals within the broader US Duchenne community. Caregiver interviews explored attitudes towards and experiences with clinical trials, while professional interviews explored barriers to clinical trial participation among socio-demographically underrepresented families (e.g., low income, rural, racial/ethnic minority, etc.). Interviews were analyzed aggregately and using a thematic analysis approach. An advisory group was engaged throughout the course of the study to inform design, conduct, and interpretation of findings generated from interviews. Results Thirty interviews were conducted, including with 12 Hispanic/Latina caregivers and 18 professionals. We identified barriers to clinical trial participation at various stages of the enrollment process. In the initial identification of patients, barriers included lack of awareness about trials and clinical trial locations at clinics that were less likely to serve diverse patients. In the prescreening process, barriers included ineligibility, anticipated non-compliance in clinical trial protocols, and language discrimination. In screening, barriers included concerns about characteristics of the trial, as well as mistrust/lack of trust. In consent and recruitment, barriers included lack of timely decision support, logistical factors (distance, time, money), and lack of translated study materials. Conclusions Numerous barriers hinder participation in Duchenne clinical trials for Hispanic/Latino families and other populations experiencing health disparities. Addressing these barriers necessitates interventions across multiple stages of the clinical trial enrollment process. Recommendations to enhance participation opportunities include developing clinical trial decision support tools, translating prominent clinical trials educational resources such as ClinicalTrials.gov, fostering trusting family-provider relationships, engaging families in clinical trial design, and establishing ethical guidelines for pre-screening potentially non-compliant patients