Papers by Charmaine Royal
Health Equity
As a foundational pillar of the Truth, Racial Healing & Transformation framework, Narrative Chang... more 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.
Advanced Genetics
Differences in health outcomes and treatment responses within and between global populations have... more Differences in health outcomes and treatment responses within and between global populations have been well documented. There is growing recognition of the need to move beyond simple inventories and descriptions of these differences and our linear explanations for them, and gain a better understanding of the multifaceted systems and networks underlying them in order to develop more precise and effective remedies. Typical targets for such integrative research have been common multifactorial diseases. We propose sickle cell disease, one of the most common monogenic diseases, as an ideal candidate for elucidating the complexity of the influences of endogenous and exogenous factors on disease pathophysiology, phenotypic diversity, and variations in responses to treatments at both the individual and population levels. We provide data-informed representations of diverse contributors to sickle cell disease complications that could guide innovative efforts to advance scientific knowledge, clinical practice, and policy formulation related to the disease; help improve outcomes for people worldwide with sickle cell disease; and inform approaches to studying and addressing other diseases.
Globalization and Health, 2021
BackgroundThe burden of sickle cell disease (SCD) is greatest among African nations. Effective sc... more BackgroundThe burden of sickle cell disease (SCD) is greatest among African nations. Effective scalability of evidence-based interventions (e.g., newborn screening, health education, prophylaxis for infection, optimal nutrition and hydration, hydroxyurea therapy, blood transfusions, and transcranial Doppler (TCD) screening) is urgently needed particularly in these settings for disease management. However, Africa is constrained by limited resources and the lack of capacity to conduct implementation science research for proper understanding of context, and assessment of barriers and facilitators to the uptake and scalability of evidence-based interventions (EBI) for SCD management.Main BodyWe outline implementation science approaches to embed EBI for SCD within the African context and highlight key implementation research programs for SCD management. Building implementation research capacity will meet the major need of developing effective life-long and accessible locally-tailored int...
Ethnicity & disease, 2006
BACKGROUND Exploring the role of ethnic identity may be a good starting point toward a better und... more BACKGROUND Exploring the role of ethnic identity may be a good starting point toward a better understanding of health attitudes in different communities. This knowledge would be most useful in addressing diseases that cause significant burden and for which known prevention and morbidity-reducing strategies are effective. OBJECTIVE The main objective was to investigate possible associations between measures of ethnic identity and health attitudes toward type 2 diabetes mellitus by using a questionnaire-based measure. MAIN OUTCOME MEASURES Attitudes measured included personal perception of susceptibility to type 2 diabetes, awareness of predisposing risk factors, and intrafamilial communication about one's diabetes diagnosis and health problems. PARTICIPANTS AND SETTING Our convenience sample consisted of Americans of African descent (N=37) who were either outpatients or their friends/relatives waiting for a clinical appointment at Howard University Family Health Clinic. RESULTS S...
American Anthropologist, 2017
This article assesses anthropological thinking about the race concept and its applications. Drawn... more This article assesses anthropological thinking about the race concept and its applications. Drawn from a broader national survey of geneticists' and anthropologists' views on race, in this analysis, we provide a qualitative account of anthropologists' perspectives. We delve deeper than simply asserting that "race is a social construct." Instead, we explore the differential ways in which anthropologists describe and interpret how race is constructed. Utilizing the heuristic of constructors, shifters, and reconcilers, we also illustrate the ways in which anthropologists conceptualize their interpretations of race along a broad spectrum as well as what these differential approaches reveal about the ideological and biological consequences of socially defined races, such as racism in general and racialized health disparities in particular. [race concept, social construction, racism, health disparities] tle, WA 98109
Genetics in medicine : official journal of the American College of Medical Genetics, Jan 20, 2017
PurposeTelephone disclosure of genetic test results can improve access to services. To date, stud... more PurposeTelephone disclosure of genetic test results can improve access to services. To date, studies of its impact have focused on return of Mendelian risk information, principally hereditary cancer syndromes.MethodsIn a multisite trial of Alzheimer disease genetic risk disclosure, asymptomatic adults were randomized to receive test results in person or via telephone. Primary analyses examined patient outcomes 12 months after disclosure.ResultsData from 257 participants showed that telephone disclosure occurred 7.4 days sooner and was 30% shorter, on average, than in-person disclosure (both P < 0.001). Anxiety and depression scores were well below cutoffs for clinical concern across protocols. Comparing telephone and in-person disclosure protocols, 99% confidence intervals of mean differences were within noninferiority margins on scales assessing anxiety, depression, and test-related distress, but inconclusive about positive impact. No differences were observed on measures of rec...
Journal of empirical research on human research ethics : JERHRE, Jul 1, 2017
Conducting genetics-related research with populations that have historically experienced consider... more Conducting genetics-related research with populations that have historically experienced considerable harm and little benefit from genetics research poses unique challenges for understanding community-based perceptions of new genetic technologies. This article identifies challenges and strategies for collecting qualitative data on the perceptions of direct-to-consumer (DTC) Genetic Ancestry tests (GAT) among diverse Indigenous communities. Based on a 3-year project related to perceptions, attitudes, and values associated with genetic ancestry testing among diverse Indigenous communities in Oklahoma, the engagement process revealed specific opportunities to improve the process of qualitative data collection related to GAT, and more broadly, to conduct genetics-related research with Indigenous communities in culturally and methodologically appropriate ways. Priority areas include issues related to participant recruitment and tribal advisory boards, challenges of self-identification as...
Cardiovascular Journal Of Africa, 2015
Background: Sickle cell disease (SCD) has a high prevalence in sub-Saharan Africa. There are seve... more Background: Sickle cell disease (SCD) has a high prevalence in sub-Saharan Africa. There are several cardiovascular phenotypes in SCD that contribute to its morbidity and mortality. Discussion: SCD is characterised by marked clinical variability, with genetic factors playing key modulating roles. Studies in Tanzania and Cameroon have reported that singlenucleotide polymorphisms in BCL11A and HBS1L-MYB loci and co-inheritance of alpha-thalassaemia impact on foetal haemoglobin levels and clinical severity. The prevalence of overt stroke among SCD patients in Cameroon (6.7%) and Nigeria (8.7%) suggests a higher burden than in high-income countries. There is also some evidence of high burden of kidney disease and pulmonary hypertension in SCD; however, the burden and genetics of these cardiovascular conditions have seldom been investigated in Africa. Conclusions: Several H3Africa projects are focused on cardiovascular diseases and present major opportunities to build genome-based research on existing SCD platforms in Africa to transform the health outcomes of patients.
Ethnicity & disease, 2001
African-American men are more likely to develop and die from prostate cancer than are European-Am... more African-American men are more likely to develop and die from prostate cancer than are European-American men; yet, factors responsible for the racial disparity in incidence and mortality have not been elucidated. Socioeconomic disadvantage is more prevalent among African-American than among European-American men. Socioeconomic disadvantage can lead to psychosocial stress and may be linked to negative lifestyle behaviors. Regardless of socioeconomic position, African-American men routinely experience racism-induced stress. We propose a theoretical framework for an association between psychosocial stress and prostate cancer. Within the context of history and culture, we further propose that psychosocial stress may partially explain the variable incidence of prostate cancer between these diverse groups. Psychosocial stress may negatively impact the immune system leaving the individual susceptible to malignancies. Behavioral responses to psychosocial stress are amenable to change. If psy...
Nature Genetics, 2004
What is the relationship between the patterns of biological and sociocultural variation in extant... more What is the relationship between the patterns of biological and sociocultural variation in extant humans? Is this relationship accurately described, or best explained, by the term 'race' and the schema of 'racial' classification? What is the relationship between 'race', genetics and the demographic groups of society? Can extant humans be categorized into units that can scientifically be called 'races'? These questions underlie the discussions that address the explanations for the observed differences in many domains between named demographic groups across societies. These domains include disease incidence and prevalence and other variables studied by biologists and social scientists. Here, we offer a perspective on understanding human variation by exploring the meaning and use of the term 'race' and its relationship to a range of data. The quest is for a more useful approach with which to understand human biological variation, one that may provide better research designs and inform public policy. 'Race': semantics and confusion The term 'race' engenders much discussion, with little agreement between those who claim that 'races' are real (meaning natural) biological entities and those who maintain that they are socially constructed 1. The former group sometimes stresses empirical evidence for the existence of biological 'racial' differences, and the latter stresses the role that human agency has had in creating distinctions between people (on any level). Biologists also disagree about the meaning of 'race' , and whether it is applicable to human infraspecific (within-species) variation 2-5. An examination of these discussions indicates that there is a problem with semantics. 'Race' is not being defined or used consistently; its referents are varied and shift depending on context. The term is often used colloquially to refer to a range of human groupings. Religious, cultural, social, national, ethnic, linguistic, genetic, geographical and anatomical groups have been and sometimes still are called 'races' 6,7. In anthropology, the meaning of race became formalized for humans and restricted to units based on biological variation in keeping with general zoological practice 8,9. Classifications were based on somatic traits.
Alzheimer's & Dementia, 2015
Introduction: Conventional multisession genetic counseling is currently recommended when disclosi... more Introduction: Conventional multisession genetic counseling is currently recommended when disclosing apolipoprotein E (APOE) genotype for the risk of Alzheimer's disease (AD) in cognitively normal individuals. The objective of this study was to evaluate the safety of brief disclosure protocols for disclosing APOE genotype for the risk of AD. Methods: A randomized, multicenter noninferiority trial was conducted at four sites. Participants were asymptomatic adults having a first-degree relative with AD. A standard disclosure protocol by genetic counselors (SP-GC) was compared with condensed protocols, with disclosures by genetic counselors (CP-GC) and by physicians (CP-MD). Preplanned co-primary outcomes were anxiety and depression scales 12 months after disclosure. Results: Three hundred and forty-three adults (mean age 58.3, range 33-86 years, 71% female, 23% African American) were randomly assigned to the SP-GC protocol (n 5 115), CP-GC protocol (n 5 116), or CP-MD protocol (n 5 112). Mean postdisclosure scores on all outcomes were well below cutoffs for clinical concern across protocols. Comparing CP-GC with SP-GC, the 97.5% upper confidence limits at 12 months after disclosure on co-primary outcomes of anxiety and depression ranged from a difference of 1.2 to 2.0 in means (all P ,.001 on noninferiority tests), establishing noninferiority for condensed protocols. Results were similar between European Americans and African Americans. Conclusions: These data support the safety of condensed protocols for APOE disclosure for those free of severe anxiety or depression who are actively seeking such information.
Public Health Genomics, 2014
Genomic research is one of the tools for elucidating the pathogenesis of diseases of global healt... more Genomic research is one of the tools for elucidating the pathogenesis of diseases of global health relevance and paving the research dimension to clinical and public health translation. Recent advances in genomic research and technologies have increased our understanding of human diseases, genes associated with these disorders, and the relevant mechanisms. Genome-wide association studies (GWAS) have proliferated since the first studies were published several years ago and have become an important tool in helping researchers comprehend human variation and the role genetic variants play in disease. However, the need to expand the diversity of populations in GWAS has become increasingly apparent as new knowledge is gained about genetic variation. Inclusion of diverse populations in genomic studies is critical to a more complete understanding of human variation and elucidation of the underpinnings of complex diseases. In this review, we summarize the available data on GWAS in recent Afr...
The Prostate, 2006
BACKGROUND. The African American Hereditary Prostate Cancer (AAHPC) Study was designed to recruit... more BACKGROUND. The African American Hereditary Prostate Cancer (AAHPC) Study was designed to recruit families with early-onset disease fulfilling criteria of !4 affected. METHODS. We present a $10 cM genome-wide linkage (GWL) analysis on 77 families including 254 affected and 274 unaffected genotyped. RESULTS. Linkage analysis revealed three chromosomal regions with GENEHUNTER multipoint HLOD scores !1.3 for all 77 families at 11q22, 17p11, and Xq21. One family yielded genome-wide significant evidence of linkage (LOD ¼ 3.5) to the 17p11 region with seven other families !2.3 in this region. Twenty-nine families with no-male-to-male (MM) transmission gave a peak HLOD of 1.62 (a ¼ 0.33) at the Xq21 locus. Two novel peaks !0.91 for the 16 families with '>6 affected' occurred at 2p21 and 22q12.
Journal of Medical Ethics, 2006
Among bioethicists and members of the public, genetics is often regarded as unique in its ethical... more Among bioethicists and members of the public, genetics is often regarded as unique in its ethical challenges. As medical researchers and clinicians increasingly combine genetic information with a range of non-genetic information in the study and clinical management of patients with common diseases, the unique ethical challenges attributed to genetics must be reexamined. A process of genetic routinisation that will have implications for research and clinical ethics, as well as for public conceptions of genetic information, is constituted by the emergence of new forms of genetic medicine, in which genetic information is interpreted in a multifactorial frame of reference. Although the integration of genetics in medical research and treatment may be a helpful corrective to the mistaken assumptions of genetic essentialism or determinism, the routinisation of genetics may have unintended consequences for the protection of genetic information, perceptions of non-genetic information and the loss of genetic research as a laboratory for exploring issues in research and clinical ethics. Consequently, new ethical challenges are presented by the increasing routinisation of genetic information in both biomedical and public spheres.
Journal of Medical Ethics, 2013
Journal of Law, Medicine & Ethics, 2011
Since the first phase of the formal effort to sequence the human genome, geneticists, social scie... more Since the first phase of the formal effort to sequence the human genome, geneticists, social scientists and other scholars of race and ethnicity have warned that new genetic technologies and knowledge could have negative social effects, from biologizing racial and ethnic categories to the emergence of dangerous forms of genetic discrimination. Early on in the Human Genome Project (HGP), population geneticists like Luigi Luca Cavalli-Sforza enthusiastically advocated for the collection of DNA samples from global indigenous populations in order to track the history of human ancestry, migration, and languages, while social scientists like Troy Duster insisted that the new genetics was in danger of ushering in insidious practices of eugenics. The Human Genome Diversity Project's 1991 proposal to archive human genetic variation around the world quickly came under intense scrutiny by indigenous peoples and advocacy groups who worried that such measures could exploit indigenous groups ...
Journal of Genetic Counseling, 2011
Journal of Community Genetics, 2011
Journal of Black Psychology, 2009
This article offers a model that clarifies the degree of interdependence between social ecology a... more This article offers a model that clarifies the degree of interdependence between social ecology and genomic processes. Drawing on principles from nonlinear dynamics, the model delineates major lines of bifurcation involving people's habitat, their family health history, and collective catastrophes experienced by their community. It shows how mechanisms of resource acquisition, depletion, and preservation can lead to disruptions in basic metabolism and in the activity of cytokines, neurotransmitters, and protein kinases, thus giving impetus to epigenetic changes. The hypotheses generated from the model are discussed throughout the article for their relevance to health problems among African Americans. Where appropriate, they are examined in light of data from the National Vital Statistics System. Multiple health outcomes are considered. For any one of them, the model makes clear the unique and converging contributions of multiple antecedent factors.
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Papers by Charmaine Royal