Scholars@Duke
Charmaine DM Royal

Charmaine DM Royal

Robert O. Keohane Professor of African & African American Studies
African & African American Studies
charmaine.royal@duke.edu
Duke Box 90252, Durham, NC 27708
234 Friedl Bldg, Box 90252, Durham, NC 27708-0141
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Selected Publications

A CAMPUS NARRATIVE OF A RESEARCH-INFORMED VISIONING PROCESS

Chapter · January 1, 2024 The vision, mission, and goals of the Duke Center for Truth, Racial Healing & Transformation (Duke TRHT Center) align with those of Duke University and are guided by the framework and principles of the national TRHT Movement. As an institution, Duke contin ... Full text Cite

Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States.

Journal Article Psychology, health & medicine · June 2023 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 condit ... Full text Cite

Guidelines for genetic ancestry inference created through roundtable discussions.

Journal Article HGG advances · April 2023 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 t ... Full text Cite

Science, Society, and Dismantling Racism.

Journal Article Health equity · January 2023 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 ... Full text Cite

Cardiologists' Perspectives on BiDil and the Use of Race in Drug Prescribing.

Journal Article Journal of racial and ethnic health disparities · December 2022 ObjectivesWe explored cardiologists' attitudes and prescribing patterns specific to the use of generic isosorbide dinitrate and hydralazine hydrochloride, and the fixed-dose patented drug, BiDil.BackgroundSince the Food and Drug Administr ... Full text Cite

Herstory as an Important Force in Bioethics.

Journal Article The Hastings Center report · March 2022 This tribute celebrates the life and work of Marian Gray Secundy (1938-2002), who was the first director of the National Center for Bioethics in Research and Health Care, a passionate advocate for health equity, a visionary scholar, and a skilled editor an ... Full text Cite

Translational Science, DNA Commercialization, and Informed Consent: The Need for Specific Terminology, Insights from a Review of H3Africa Projects.

Journal Article Public health genomics · January 2022 In the past decade, there has been an acceleration in genomic research, its applications, and its translation into healthcare products and services for the benefit of public health. These advances are critical to realizing the potential of genomic research ... Full text Cite

Centering Equity in Human Genetics and Genomics Advances.

Journal Article HGG advances · October 2021 Full text Cite

The Impact of Environmental Factors on Monogenic Mendelian Diseases.

Journal Article Toxicological sciences : an official journal of the Society of Toxicology · April 2021 Environmental factors and gene-environment interactions modify the variable expressivity, progression, severity, and onset of some classic (monogenic) Mendelian-inherited genetic diseases. Cystic fibrosis, Huntington disease, Parkinson's disease, and sickl ... Full text Open Access Cite

"Pain is Subjective": A Mixed-Methods Study of Provider Attitudes and Practices Regarding Pain Management in Sickle Cell Disease Across Three Countries.

Journal Article J Pain Symptom Manage · March 2021 CONTEXT: Sickle cell disease (SCD), an autosomal recessive blood disorder, affects millions of people worldwide. Approximately 80% of all cases are located in Africa. OBJECTIVES: This cross-national, interdisciplinary, collaborative study investigated prov ... Full text Link to item Cite

Sickle cell disease is a global prototype for integrative research and healthcare.

Journal Article Adv Genet (Hoboken) · March 2021 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 explanat ... Full text Open Access Link to item Cite

Implementation science research for the scale-up of evidence-based interventions for sickle cell disease in africa: a commentary.

Journal Article Globalization and health · February 2021 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, hydr ... Full text Cite

Genetic ancestry, skin color and social attainment: The four cities study.

Journal Article PloS one · January 2020 IntroductionThe Black population in the US is heterogeneous but is often treated as monolithic in research, with skin pigmentation being the primary indicator of racial classification. Objective: This paper examines the differences among Blacks by ... Full text Open Access Cite

"We Don't Need a Swab in Our Mouth to Prove Who We Are": Identity, Resistance, and Adaptation of Genetic Ancestry Testing among Native American Communities.

Journal Article Current anthropology · October 2019 Genetic ancestry testing (GAT) provides a specific type of knowledge about ancestry not previously available to the general public, prompting questions about the conditions whereby genetic articulations of ancestry present opportunities to forge new identi ... Full text Cite

Twelve tips for teaching a comprehensive disease-focused course with a global perspective: A sickle cell disease example.

Journal Article Medical teacher · March 2019 A disease-focused course entitled "Understanding Sickle Cell Disease: A Biopsychosocial Approach" addressed the complex nature of SCD using patient-centered, global and interdisciplinary approaches. Sickle cell disease (SCD) is a rare inherited blood disor ... Full text Cite

Cardiologists' Perspectives on Race-Based Drug Labels and Prescribing Within the Context of Treating Heart Failure.

Journal Article Health equity · January 2019 Purpose: Cardiologists are known to consider patients' race when treating heart failure, but their views on the benefits and harms of this practice are largely undocumented. We set out to explore cardiologists' perspectives on the benefits and harms ... Full text Cite

The Sickle Cell Disease Ontology: enabling universal sickle cell-based knowledge representation.

Journal Article Database : the journal of biological databases and curation · January 2019 Sickle cell disease (SCD) is one of the most common monogenic diseases in humans with multiple phenotypic expressions that can manifest as both acute and chronic complications. Although described more than a century ago, challenges in comprehensive disease ... Full text Open Access Cite

Implementation of the NCAA Sickle Cell Trait Screening Policy: A Survey of Athletic Staff and Student-athletes.

Journal Article Journal of the National Medical Association · December 2018 ObjectiveTo describe the perspectives and experiences of athletic trainers, coaches, and student-athletes approximately three years post-implementation of the NCAA sickle cell trait (SCT) screening policy.ParticipantsTwo-hundred and eight ... Full text Open Access Cite

A content analysis of the views of genetics professionals on race, ancestry, and genetics.

Journal Article AJOB empirical bioethics · October 2018 Over the past decade, the proliferation of genetic studies on human health and disease has reinvigorated debates about the appropriate role of race and ancestry in research and clinical care. Here we report on the responses of genetics professionals to a s ... Full text Open Access Cite

A CAMPUS NARRATIVE OF A RESEARCH-INFORMED VISIONING PROCESS

Chapter · January 1, 2024 The vision, mission, and goals of the Duke Center for Truth, Racial Healing & Transformation (Duke TRHT Center) align with those of Duke University and are guided by the framework and principles of the national TRHT Movement. As an institution, Duke contin ... Full text Cite

Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States.

Journal Article Psychology, health & medicine · June 2023 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 condit ... Full text Cite

Guidelines for genetic ancestry inference created through roundtable discussions.

Journal Article HGG advances · April 2023 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 t ... Full text Cite

Science, Society, and Dismantling Racism.

Journal Article Health equity · January 2023 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 ... Full text Cite

Cardiologists' Perspectives on BiDil and the Use of Race in Drug Prescribing.

Journal Article Journal of racial and ethnic health disparities · December 2022 ObjectivesWe explored cardiologists' attitudes and prescribing patterns specific to the use of generic isosorbide dinitrate and hydralazine hydrochloride, and the fixed-dose patented drug, BiDil.BackgroundSince the Food and Drug Administr ... Full text Cite

Herstory as an Important Force in Bioethics.

Journal Article The Hastings Center report · March 2022 This tribute celebrates the life and work of Marian Gray Secundy (1938-2002), who was the first director of the National Center for Bioethics in Research and Health Care, a passionate advocate for health equity, a visionary scholar, and a skilled editor an ... Full text Cite

Translational Science, DNA Commercialization, and Informed Consent: The Need for Specific Terminology, Insights from a Review of H3Africa Projects.

Journal Article Public health genomics · January 2022 In the past decade, there has been an acceleration in genomic research, its applications, and its translation into healthcare products and services for the benefit of public health. These advances are critical to realizing the potential of genomic research ... Full text Cite

Centering Equity in Human Genetics and Genomics Advances.

Journal Article HGG advances · October 2021 Full text Cite

The Impact of Environmental Factors on Monogenic Mendelian Diseases.

Journal Article Toxicological sciences : an official journal of the Society of Toxicology · April 2021 Environmental factors and gene-environment interactions modify the variable expressivity, progression, severity, and onset of some classic (monogenic) Mendelian-inherited genetic diseases. Cystic fibrosis, Huntington disease, Parkinson's disease, and sickl ... Full text Open Access Cite

"Pain is Subjective": A Mixed-Methods Study of Provider Attitudes and Practices Regarding Pain Management in Sickle Cell Disease Across Three Countries.

Journal Article J Pain Symptom Manage · March 2021 CONTEXT: Sickle cell disease (SCD), an autosomal recessive blood disorder, affects millions of people worldwide. Approximately 80% of all cases are located in Africa. OBJECTIVES: This cross-national, interdisciplinary, collaborative study investigated prov ... Full text Link to item Cite

Sickle cell disease is a global prototype for integrative research and healthcare.

Journal Article Adv Genet (Hoboken) · March 2021 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 explanat ... Full text Open Access Link to item Cite

Implementation science research for the scale-up of evidence-based interventions for sickle cell disease in africa: a commentary.

Journal Article Globalization and health · February 2021 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, hydr ... Full text Cite

Genetic ancestry, skin color and social attainment: The four cities study.

Journal Article PloS one · January 2020 IntroductionThe Black population in the US is heterogeneous but is often treated as monolithic in research, with skin pigmentation being the primary indicator of racial classification. Objective: This paper examines the differences among Blacks by ... Full text Open Access Cite

"We Don't Need a Swab in Our Mouth to Prove Who We Are": Identity, Resistance, and Adaptation of Genetic Ancestry Testing among Native American Communities.

Journal Article Current anthropology · October 2019 Genetic ancestry testing (GAT) provides a specific type of knowledge about ancestry not previously available to the general public, prompting questions about the conditions whereby genetic articulations of ancestry present opportunities to forge new identi ... Full text Cite

Twelve tips for teaching a comprehensive disease-focused course with a global perspective: A sickle cell disease example.

Journal Article Medical teacher · March 2019 A disease-focused course entitled "Understanding Sickle Cell Disease: A Biopsychosocial Approach" addressed the complex nature of SCD using patient-centered, global and interdisciplinary approaches. Sickle cell disease (SCD) is a rare inherited blood disor ... Full text Cite

Cardiologists' Perspectives on Race-Based Drug Labels and Prescribing Within the Context of Treating Heart Failure.

Journal Article Health equity · January 2019 Purpose: Cardiologists are known to consider patients' race when treating heart failure, but their views on the benefits and harms of this practice are largely undocumented. We set out to explore cardiologists' perspectives on the benefits and harms ... Full text Cite

The Sickle Cell Disease Ontology: enabling universal sickle cell-based knowledge representation.

Journal Article Database : the journal of biological databases and curation · January 2019 Sickle cell disease (SCD) is one of the most common monogenic diseases in humans with multiple phenotypic expressions that can manifest as both acute and chronic complications. Although described more than a century ago, challenges in comprehensive disease ... Full text Open Access Cite

Implementation of the NCAA Sickle Cell Trait Screening Policy: A Survey of Athletic Staff and Student-athletes.

Journal Article Journal of the National Medical Association · December 2018 ObjectiveTo describe the perspectives and experiences of athletic trainers, coaches, and student-athletes approximately three years post-implementation of the NCAA sickle cell trait (SCT) screening policy.ParticipantsTwo-hundred and eight ... Full text Open Access Cite

A content analysis of the views of genetics professionals on race, ancestry, and genetics.

Journal Article AJOB empirical bioethics · October 2018 Over the past decade, the proliferation of genetic studies on human health and disease has reinvigorated debates about the appropriate role of race and ancestry in research and clinical care. Here we report on the responses of genetics professionals to a s ... Full text Open Access Cite

Genes, Race, and Causation: US Public Perspectives About Racial Difference.

Journal Article Race and social problems · June 2018 Concerns have been raised that the increase in popular interest in genetics may herald a new era within which racial inequities are seen as 'natural' or immutable. In the following study, we provide data from a nationally representative survey on how the U ... Full text Open Access Cite

A randomized controlled trial of disclosing genetic risk information for Alzheimer disease via telephone.

Journal Article Genetics in medicine : official journal of the American College of Medical Genetics · January 2018 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 diseas ... Full text Cite

Perspectives and Practices of Athletic Trainers and Team Physicians Implementing the 2010 NCAA Sickle Cell Trait Screening Policy.

Journal Article Journal of genetic counseling · December 2017 Sickle cell trait (SCT) is usually benign. However, there are some conditions that may lead to SCT-related problems and put athletes with the trait at particular risk. In 2010 the National Collegiate Athletic Association (NCAA) issued a policy that require ... Full text Cite

A Qualitative Analysis of How Anthropologists Interpret the Race Construct.

Journal Article American anthropologist · September 2017 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' pers ... Full text Cite

Barriers and Strategies Related to Qualitative Research on Genetic Ancestry Testing in Indigenous Communities.

Journal Article Journal of empirical research on human research ethics : JERHRE · July 2017 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 art ... Full text Cite

Stakeholder Perspectives on Public Health Genomics Applications for Sickle Cell Disease: A Methodology for a Human Heredity and Health in Africa (H3Africa) Qualitative Research Study

Journal Article OMICS A Journal of Integrative Biology · June 1, 2017 Advances in omics technologies alone are not a guarantee that science will translate to robust responsible innovation that is firmly grounded in societal values. This study aimed to identify best practices for Ethical, Legal, and Social Implications (ELSI) ... Full text Cite

Anthropologists' views on race, ancestry, and genetics.

Journal Article American journal of physical anthropology · February 2017 Controversies over race conceptualizations have been ongoing for centuries and have been shaped, in part, by anthropologists.ObjectiveTo assess anthropologists' views on race, genetics, and ancestry.MethodsIn 2012 a broad national survey ... Full text Cite

Will Precision Medicine Move Us beyond Race?

Journal Article The New England journal of medicine · May 2016 Full text Cite

Disclosing Pleiotropic Effects During Genetic Risk Assessment for Alzheimer Disease: A Randomized Trial.

Journal Article Annals of internal medicine · February 2016 BackgroundIncreasing use of genetic testing raises questions about disclosing secondary findings, including pleiotropic information.ObjectiveTo determine the safety and behavioral effect of disclosing modest associations between apolipopr ... Full text Cite

A global reference for human genetic variation.

Journal Article Nature · October 1, 2015 The 1000 Genomes Project set out to provide a comprehensive description of common human genetic variation by applying whole-genome sequencing to a diverse set of individuals from multiple populations. Here we report completion of the project, having recons ... Full text Link to item Cite

A randomized noninferiority trial of condensed protocols for genetic risk disclosure of Alzheimer's disease.

Journal Article Alzheimer's & dementia : the journal of the Alzheimer's Association · October 2015 IntroductionConventional 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 evalu ... Full text Cite

Sickle cell disease and H3Africa: enhancing genomic research on cardiovascular diseases in African patients.

Journal Article Cardiovascular journal of Africa · March 2015 BackgroundSickle 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.DiscussionSCD is characterised by marked clinical variabili ... Full text Cite

Genome-wide association studies in Africans and African Americans: expanding the framework of the genomics of human traits and disease.

Journal Article Public health genomics · January 2015 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 ou ... Full text Cite

Would you terminate a pregnancy affected by sickle cell disease? Analysis of views of patients in Cameroon.

Journal Article Journal of medical ethics · September 2014 Sickle cell disease (SCD) is a debilitating illness that affects quality of life and life expectancy for patients. In Cameroon, it is now possible to opt for termination of an affected pregnancy (TAP) where the fetus is found to be affected by SCD. Our ear ... Full text Cite

Integrating sequence and array data to create an improved 1000 Genomes Project haplotype reference panel.

Journal Article Nature communications · June 2014 A major use of the 1000 Genomes Project (1000 GP) data is genotype imputation in genome-wide association studies (GWAS). Here we develop a method to estimate haplotypes from low-coverage sequencing data that can take advantage of single-nucleotide polymorp ... Full text Cite

Human genomic regions with exceptionally high levels of population differentiation identified from 911 whole-genome sequences.

Journal Article Genome biology · June 2014 BackgroundPopulation differentiation has proved to be effective for identifying loci under geographically localized positive selection, and has the potential to identify loci subject to balancing selection. We have previously investigated the patt ... Full text Open Access Cite

Integrative annotation of variants from 1092 humans: application to cancer genomics.

Journal Article Science (New York, N.Y.) · October 2013 Interpreting variants, especially noncoding ones, in the increasing number of personal genomes is challenging. We used patterns of polymorphisms in functionally annotated regions in 1092 humans to identify deleterious variants; then we experimentally valid ... Full text Cite

Personal DNA testing in college classrooms: perspectives of students and professors.

Journal Article Genetic testing and molecular biomarkers · June 2013 Featured Publication Discourse on the integration of personal genetics and genomics into classrooms is increasing; however, limited data have been collected on the perspectives of students and professors. We conducted a cross-sectional survey of undergraduate and graduate stud ... Full text Open Access Cite

An integrated map of genetic variation from 1,092 human genomes.

Journal Article Nature · November 2012 By characterizing the geographic and functional spectrum of human genetic variation, the 1000 Genomes Project aims to build a resource to help to understand the genetic contribution to disease. Here we describe the genomes of 1,092 individuals from 14 popu ... Full text Cite

Field of genes: an investigation of sports-related genetic testing.

Journal Article Journal of personalized medicine · September 2012 Featured Publication Sports-related genetic testing is a sector of the diverse direct-to-consumer (DTC) industry that has not yet been examined thoroughly by academic scholars. A systematic search was used to identify companies in this sector and content analysis of online inf ... Full text Cite

The serotonin transporter gene polymorphism (5HTTLPR) moderates the effect of adolescent environmental conditions on self-esteem in young adulthood: a structural equation modeling approach.

Journal Article Biol Psychol · September 2012 Featured Publication Here we examine the effects of both self-reported and independent observer-reported environmental risk indices, the serotonin transporter gene promoter (5HTTLPR) polymorphism, and their interaction on self-esteem. This trait was assessed during early and m ... Full text Open Access Link to item Cite

Tilting at windmills no longer: a data-driven discussion of DTC DNA ancestry tests.

Journal Article Genetics in medicine : official journal of the American College of Medical Genetics · June 2012 Featured Publication PurposeDiscussions about direct-to-consumer (DTC) DNA ancestry tests have to date been based primarily on conjectures, speculation, and anecdotes, despite the industry being more than a decade old. Representative, empirical data on consumer charac ... Full text Cite

Evaluation findings from genetics and family health history community-based workshops for African Americans.

Journal Article Journal of community genetics · January 2012 Featured Publication The purpose of this study was to examine the implementation and effectiveness of community education workshops to change genetics and health-related knowledge, intentions, and behavior of urban African Americans. Eight workshops were held and 183 participa ... Full text Cite

Differences between African American and White research volunteers in their attitudes, beliefs and knowledge regarding genetic testing for Alzheimer's disease.

Journal Article Journal of genetic counseling · December 2011 Genetic susceptibility testing for common diseases is expanding, but little is known about race group differences in test perceptions. The purpose of this study was to examine differences between African Americans and Whites in knowledge, attitudes, and mo ... Full text Cite

Genome-sequencing anniversary. My genome, my identity, my health.

Journal Article Science (New York, N.Y.) · February 2011 Full text Cite

Living with sickle cell disease: traversing 'race' and identity.

Journal Article Ethn Health · 2011 OBJECTIVES: Sickle cell disease (SCD) has a distinctive social history that continues to influence research and clinical practice related to the disease. Despite the historical link between SCD and concepts of 'race', there is limited empirical information ... Full text Link to item Cite

Grassroots marketing in a global era: more lessons from BiDil.

Journal Article The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · January 2011 Full text Cite

Clinical and sociodemographic factors predict coping styles among adults with sickle cell disease.

Journal Article J Natl Med Assoc · November 2010 UNLABELLED: Sickle cell disease (SCD) presents a significant physical and psychological burden for persons with this chronic disease; however, little is known about how individuals with SCD--adult patients in particular--cope with disease-related stressors ... Full text Link to item Cite

Regional differences in awareness and attitudes regarding genetic testing for disease risk and ancestry.

Journal Article Human genetics · September 2010 Little is known about the lay public's awareness and attitudes concerning genetic testing and what factors influence their perspectives. The existing literature focuses mainly on ethnic and socioeconomic differences; however, here we focus on how awareness ... Full text Cite

Integrating common and rare genetic variation in diverse human populations.

Journal Article Nature · September 2010 Despite great progress in identifying genetic variants that influence human disease, most inherited risk remains unexplained. A more complete understanding requires genome-wide studies that fully examine less common alleles in populations with a wide range ... Full text Cite

Report on the 6th African Society of Human Genetics (AfSHG) Meeting, March 12-15, 2009, Yaounde, Cameroon.

Journal Article The American journal of tropical medicine and hygiene · August 2010 The African Society of Human Genetics (AfSHG), founded in 2003 with its inaugural meeting in Accra, Ghana,1 has the stated missions of (1) disseminating information about human genetics research in Africa, (2) establishing a mentorship network providing ed ... Full text Cite

Inferring genetic ancestry: opportunities, challenges, and implications.

Journal Article American journal of human genetics · May 2010 Increasing public interest in direct-to-consumer (DTC) genetic ancestry testing has been accompanied by growing concern about issues ranging from the personal and societal implications of the testing to the scientific validity of ancestry inference. The ve ... Full text Cite

Race, genetics and health: An introduction

Journal Article Review of Black Political Economy · January 1, 2010 The emergence of putative race-specific or ethnic-specific medicines appears to be overturning a new consensus reached by physical anthropologists that race is a biological fiction. This article examines whether there is substance to the notion that conven ... Full text Cite

Social Ecology, Genomics, and African American Health: A Nonlinear Dynamical Perspective.

Journal Article The Journal of black psychology · January 2009 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 h ... Full text Cite

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience.

Journal Article Genetics in medicine : official journal of the American College of Medical Genetics · March 2008 PurposeTo describe how investigators in a multisite randomized clinical trial addressed scientific and ethical issues involved in creating risk models based on genetic testing for African American participants.MethodsThe following informe ... Full text Cite

A second generation human haplotype map of over 3.1 million SNPs.

Journal Article Nature · October 2007 We describe the Phase II HapMap, which characterizes over 3.1 million human single nucleotide polymorphisms (SNPs) genotyped in 270 individuals from four geographically diverse populations and includes 25-35% of common SNP variation in the populations surv ... Full text Cite

Genome-wide detection and characterization of positive selection in human populations.

Journal Article Nature · October 2007 With the advent of dense maps of human genetic variation, it is now possible to detect positive natural selection across the human genome. Here we report an analysis of over 3 million polymorphisms from the International HapMap Project Phase 2 (HapMap2). W ... Full text Cite

Race, Genetics, and Ethics

Chapter · May 3, 2007 Cite

The role of genetic and sociopolitical definitions of race in clinical trials.

Journal Article The Journal of the American Academy of Orthopaedic Surgeons · January 2007 Although the concept of race has been disputed for decades, race continues to be used as a variable in biomedical research. Public Law 103-43 calls on the National Institutes of Health to develop guidelines for defining "minority group" and "their subpopul ... Full text Cite

Genetic and social environment interactions and their impact on health policy.

Journal Article The Journal of the American Academy of Orthopaedic Surgeons · January 2007 Genetic and social factors are not as separate as once thought. Researchers within the social sciences are beginning to realize that genetics and the social environment interact synergistically to affect health behaviors and outcomes. This way of thinking ... Full text Cite

Community engagement and informed consent in the International HapMap project.

Journal Article Community genetics · January 2007 The International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each localit ... Full text Cite

Genome-wide linkage of 77 families from the African American Hereditary Prostate Cancer study (AAHPC).

Journal Article The Prostate · January 2007 BackgroundThe African American Hereditary Prostate Cancer (AAHPC) Study was designed to recruit families with early-onset disease fulfilling criteria of >or=4 affected.MethodsWe present a approximately 10 cM genome-wide linkage (GWL) anal ... Full text Cite

The routinisation of genomics and genetics: implications for ethical practices.

Journal Article Journal of medical ethics · November 2006 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 m ... Full text Cite

Ethnic identity and type 2 diabetes health attitudes in Americans of African ancestry.

Journal Article Ethnicity & disease · January 2006 BackgroundExploring 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 f ... Cite

Ethical implications of ancestry testing and genetic identity.

Journal Article AMERICAN JOURNAL OF PHYSICAL ANTHROPOLOGY · January 1, 2006 Link to item Cite

A haplotype map of the human genome.

Journal Article Nature · October 2005 Inherited genetic variation has a critical but as yet largely uncharacterized role in human disease. Here we report a public database of common variation in the human genome: more than one million single nucleotide polymorphisms (SNPs) for which accurate a ... Full text Cite

Study design for genetic analysis in the Jackson Heart Study

Journal Article ETHNICITY & DISEASE · September 1, 2005 Link to item Cite

Study design for genetic analysis in the Jackson Heart Study.

Journal Article Ethnicity & disease · January 2005 ObjectiveThis paper describes the preparation of genetic materials and the recruitment and initial characterization of a nested Family Study within the Jackson Heart Study (JHS) METHODS: Genomic DNA was prepared from all consenting JHS participant ... Cite

Changing the paradigm from 'race' to human genome variation.

Journal Article Nature genetics · November 2004 Knowledge from the Human Genome Project and research on human genome variation increasingly challenges the applicability of the term 'race' to human population groups, raising questions about the validity of inferences made about 'race' in the biomedical a ... Full text Cite

Conceptualizing human variation.

Journal Article Nature genetics · November 2004 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 b ... Full text Cite

Integrating ethics and science in the International HapMap Project.

Journal Article Nature reviews. Genetics · June 2004 Full text Cite

Clinical characteristics of African-American men with hereditary prostate cancer: the AAHPC Study.

Journal Article Prostate cancer and prostatic diseases · January 2004 IntroductionThe African-American Hereditary Prostate Cancer (AAHPC) Study was designed to recruit African-American families fulfilling very stringent criteria of four or more members diagnosed with prostate cancer at a combined age at diagnosis of ... Full text Cite

The ethical and social implications of exploring African American genealogies.

Conference Developing world bioethics · December 2003 In June 2002, the University of Minnesota hosted a conference to explore the implications of using genetic technologies and genealogical methods to reconstruct African identity. This paper includes transcribed remarks from that conference by Annette Dula, ... Full text Cite

The International HapMap Project.

Journal Article Nature · December 2003 The goal of the International HapMap Project is to determine the common patterns of DNA sequence variation in the human genome and to make this information freely available in the public domain. An international consortium is developing a map of these patt ... Full text Cite

The Genetics of African Americans: Implications for Disease Gene Mapping and Identity

Chapter · 2003 These essays, diverse yet always mutually engaged, move past often-assumed intellectual boundaries in innovative and principled ways. ... Cite

Stability of self-reported family history of prostate cancer among African American men.

Journal Article Journal of nursing measurement · March 2002 The genome-wide search for the prostate cancer gene holds the promise of the availability of prostate cancer susceptibility testing in the near future. When this occurs, self-reported history of prostate cancer will be critical in determining who is eligib ... Full text Cite

Interest in genetic prostate cancer susceptibility testing among african American men.

Journal Article Cancer nursing · February 2002 Six regions for prostate cancer genes have been identified, and it is anticipated that prostate cancer susceptibility testing will be available in the future. This correlational study identified predictors for interest in prostate cancer susceptibility tes ... Full text Cite

African-American heredity prostate cancer study: a model for genetic research.

Journal Article Journal of the National Medical Association · December 2001 A genome-wide scan of high-risk prostate cancer families in North America has demonstrated linkage of a particular marker to Chromosome Iq (HPC11. An even greater proportion of African-American families have shown linkage to HPC 1. Therefore, investigators ... Cite

African-American heredity prostate cancer study: a model for genetic research.

Journal Article Journal of the National Medical Association · April 2001 A genome-wide scan of high-risk prostate cancer families in North America has demonstrated linkage of a particular marker to Chromosome 1q (HPC1). An even greater proportion of African-American families have shown linkage to HPC1. Therefore, investigators ... Cite

Psychosocial stress and prostate cancer: a theoretical model.

Journal Article Ethnicity & disease · January 2001 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 ... Cite

Recruitment experience in the first phase of the African American Hereditary Prostate Cancer (AAHPC) study.

Journal Article Annals of epidemiology · November 2000 The African American Hereditary Prostate Cancer (AAHPC) Study is an ongoing multicenter genetic linkage study organized by Howard University and the National Human Genome Research Institute (NHGRI), with support from the Office for Research on Minority Hea ... Full text Cite

Coping strategies in families of children with sickle cell disease.

Journal Article Ethnicity & disease · March 2000 ObjectiveTo examine the impact of family environment, morbidity, and socioeconomic status (SES) on coping strategies in families of children with sickle cell disease.DesignA cross-sectional study.MethodsThe study sample consisted ... Cite

Resilience in siblings of children with sickle cell disease.

Journal Article Journal of genetic counseling · September 1995 This pilot study was conducted to identify factors responsible for promoting resilience in siblings of children with sickle cell disease. Twenty siblings (10-17 years of age) of children (5-13 years) with sickle cell disease were selected from the Pediatri ... Full text Cite