Science & Society Certificate : Publications since January 2023

%% 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}
}