Journal articlePLOS global public health · January 2026
Advances in genetics and genomics research are revolutionizing the way we understand sickle cell disease (SCD) and approach its treatment and management. Much of this research has been conducted in high-income countries and so much of the available data is ...
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Journal articlePublic Health Genomics · 2026
INTRODUCTION: This paper describes methods for a national study evaluating the implementation of the National Collegiate Athletic Association's (NCAA) policy on sickle cell trait (SCT) screening of athletes and describes attitudes toward the screening. MET ...
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Journal articlePloS one · January 2026
BackgroundSickle cell disease (SCD) stands as one of the most prevalent genetic disorders in the United States (U.S.) that causes severe consequences such as organ damage and excruciating pain. Alarmingly, recent literature indicates a decline in ...
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Journal articleFrontiers in public health · January 2025
BackgroundPeople living with Sickle Cell Disease (SCD) experience higher rates of common mental disorders (CMD). There is an alarming treatment gap in the provision of adequate mental health services for CMDs in low- and middle-income countries (L ...
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Journal articleThe Hastings Center report · December 2024
Effectively addressing ethical issues in precision medicine research in Africa requires a holistic social contract that integrates biomedical knowledge with local cultural values and Indigenous knowledge systems. Drawing on African epistemologies such as u ...
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Journal articlePsychology, 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 ...
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Journal articleHGG 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 ...
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Journal articleHealth 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 ...
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Journal articleJournal 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 ...
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Journal articleThe 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 ...
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Journal articlePublic 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 ...
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Journal articleToxicological 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 ...
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Journal articleJ 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 ...
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Journal articleAdv 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 ...
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Journal articleGlobalization 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 ...
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Journal articlePloS 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 ...
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Journal articleCurrent 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 ...
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Journal articleMedical 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 ...
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Journal articleHealth 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 ...
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Journal articleDatabase : 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 ...
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Journal articleJournal 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 ...
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Journal articleAJOB 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 ...
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Journal articleRace 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 ...
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Journal articleGenetics 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 ...
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Journal articleJournal 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 ...
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Journal articleAmerican 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 ...
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Journal articleJournal 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 ...
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Journal articleOMICS 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) ...
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Journal articleAmerican 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 ...
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Journal articleAnnals 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 ...
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Journal articleNature · October 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 ...
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Journal articleAlzheimer'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 ...
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Journal articleCardiovascular 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 ...
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Journal articlePublic 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 ...
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Journal articleJournal 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 ...
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Journal articleNature 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 ...
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Journal articleGenome 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 ...
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Journal articleScience (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 ...
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Journal articleGenetic testing and molecular biomarkers · June 2013
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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 ...
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Journal articleNature · 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 ...
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Journal articleJournal 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 ...
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Journal articleBiol Psychol · September 2012
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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 ...
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Journal articleGenetics in medicine : official journal of the American College of Medical Genetics · June 2012
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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 ...
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Journal articleJournal of community genetics · January 2012
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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 ...
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Journal articleJournal 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 ...
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Journal articleEthn 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 ...
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Journal articleJ 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 ...
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Journal articleHuman 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 ...
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Journal articleNature · 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 ...
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Journal articleThe 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 ...
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Journal articleAmerican 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 ...
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Journal articleReview 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 ...
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Journal articleThe 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 ...
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Journal articleGenetics 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 ...
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Journal articleNature · 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 ...
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Journal articleNature · 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 ...
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Journal articleThe 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 ...
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Journal articleThe 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 ...
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Journal articleCommunity 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 ...
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Journal articleThe 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 ...
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Journal articleJournal 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 ...
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Journal articleEthnicity & 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 ...
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Journal articleNature · 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 ...
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Journal articleEthnicity & 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 ...
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Journal articleNature 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 ...
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Journal articleNature 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 ...
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Journal articleProstate 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 ...
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Journal articleNature · 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 ...
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Journal articleJournal 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 ...
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Journal articleCancer 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 ...
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Journal articleJournal 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 ...
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Journal articleJournal 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 ...
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Journal articleEthnicity & 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 ...
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Journal articleAnnals 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 ...
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Journal articleEthnicity & 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 ...
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Journal articleJournal 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 ...
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