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| Science & Society Certificate : Publications since January 2023List all publications in the database. :chronological alphabetical combined listing:%% Royal, Charmaine D. @article{fds361217, Author = {Bulgin, D and Asnani, M and Vorderstrasse, A and Royal, C and Pan, W and Tanabe, P}, Title = {Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States.}, Journal = {Psychology, health & medicine}, Volume = {28}, Number = {5}, Pages = {1133-1147}, Year = {2023}, Month = {June}, url = {http://dx.doi.org/10.1080/13548506.2021.2019808}, Abstract = {Sickle cell disease (SCD) is the most common inherited blood disorder in both Jamaica and the United States and is characterized by poor quality of life and debilitating complications, with the hallmark symptom being pain caused by acute and chronic conditions. Individuals with SCD often experience stigma due to their disease status, opioid use, and race. This study sought to understand the influence of perceived stigma and demographic/clinical characteristics on quality of life in adults with SCD in Jamaica (n = 50) and the United States (n = 50). Participants completed interviewer-administered surveys including demographic/clinical characteristics; the Measure of Sickle Cell Stigma (MoSCS); and the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me). A set of general linear models for each country was built to examine the influence of explanatory variables on the quality of life outcomes. Overall, stigma scores were low for both countries, with the exception of the MoSCS disclosure concerns and expected discrimination subscales, where scores averaged medium and high, respectively. In both countries, being employed was associated with better quality of life; and reports of stigma (internalized stigma and expected discrimination) was associated with worse quality of life. These findings have several implications for healthcare providers caring for individuals with SCD, policy makers, and researchers. Specifically, findings can be used to advocate for improved access to mental health care for individuals with SCD and inform stigma reduction intervention approaches in SCD.}, Doi = {10.1080/13548506.2021.2019808}, Key = {fds361217} } @article{fds369314, Author = {Wagner, JK and Yu, J-H and Fullwiley, D and Moore, C and Wilson, JF and Bamshad, MJ and Royal, CD and Genetic Ancestry Inference Roundtable Participants}, Title = {Guidelines for genetic ancestry inference created through roundtable discussions.}, Journal = {HGG advances}, Volume = {4}, Number = {2}, Pages = {100178}, Year = {2023}, Month = {April}, url = {http://dx.doi.org/10.1016/j.xhgg.2023.100178}, Abstract = {The use of genetic and genomic technology to infer ancestry is commonplace in a variety of contexts, particularly in biomedical research and for direct-to-consumer genetic testing. In 2013 and 2015, two roundtables engaged a diverse group of stakeholders toward the development of guidelines for inferring genetic ancestry in academia and industry. This report shares the stakeholder groups' work and provides an analysis of, commentary on, and views from the groundbreaking and sustained dialogue. We describe the engagement processes and the stakeholder groups' resulting statements and proposed guidelines. The guidelines focus on five key areas: application of genetic ancestry inference, assumptions and confidence/laboratory and statistical methods, terminology and population identifiers, impact on individuals and groups, and communication or translation of genetic ancestry inferences. We delineate the terms and limitations of the guidelines and discuss their critical role in advancing the development and implementation of best practices for inferring genetic ancestry and reporting the results. These efforts should inform both governmental regulation and self-regulation.}, Doi = {10.1016/j.xhgg.2023.100178}, Key = {fds369314} } @article{fds369315, Author = {Royal, CDM}, Title = {Science, Society, and Dismantling Racism.}, Journal = {Health equity}, Volume = {7}, Number = {1}, Pages = {38-44}, Year = {2023}, Month = {January}, url = {http://dx.doi.org/10.1089/heq.2022.29023.cro}, Abstract = {As a foundational pillar of the Truth, Racial Healing & Transformation framework, Narrative Change involves reckoning with our historical and current realities regarding "race" and racism, uprooting dominant narratives that normalize injustice and sustain oppression, and advancing narratives that promote equity and collective liberation. Narrative Change is vital to creating communal recognition and appreciation of the interconnectedness and equality of all humans and dismantling the ideology and structures of racial hierarchy. Telling new or more truthful and complete stories must include improving our understanding and messaging about what race is and what it is not as well as the relationship between race and racism. Ideas about the existence of biological human races have long been discredited by scientists and scholars in various fields. Yet, false beliefs about natural and fixed biological differences within the human species persist in some scientific studies, in aspects of health care, and in the political and legal architectures of the United States and other countries, thereby reproducing and maintaining social hierarchies. Efforts to eradicate racism and its pernicious effects are limited in their potential for sustained positive transformation unless simultaneous endeavors are undertaken to reframe people's thinking about the very concept of race. This brief provides an overview of the origins of racial hierarchy, distinguishes between biological concepts of race and socially defined race, reviews perspectives on the meanings and uses of race, and describes ongoing and potential efforts to address prevailing misunderstandings about race and racism.}, Doi = {10.1089/heq.2022.29023.cro}, Key = {fds369315} } | |
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