Dataset Information

Self-reported race/ethnicity in the age of genomic research: its potential impact on understanding health disparities.

ABSTRACT: This review explores the limitations of self-reported race, ethnicity, and genetic ancestry in biomedical research. Various terminologies are used to classify human differences in genomic research including race, ethnicity, and ancestry. Although race and ethnicity are related, race refers to a person's physical appearance, such as skin color and eye color. Ethnicity, on the other hand, refers to communality in cultural heritage, language, social practice, traditions, and geopolitical factors. Genetic ancestry inferred using ancestry informative markers (AIMs) is based on genetic/genomic data. Phenotype-based race/ethnicity information and data computed using AIMs often disagree. For example, self-reporting African Americans can have drastically different levels of African or European ancestry. Genetic analysis of individual ancestry shows that some self-identified African Americans have up to 99% of European ancestry, whereas some self-identified European Americans have substantial admixture from African ancestry. Similarly, African ancestry in the Latino population varies between 3% in Mexican Americans to 16% in Puerto Ricans. The implication of this is that, in African American or Latino populations, self-reported ancestry may not be as accurate as direct assessment of individual genomic information in predicting treatment outcomes. To better understand human genetic variation in the context of health disparities, we suggest using "ancestry" (or biogeographical ancestry) to describe actual genetic variation, "race" to describe health disparity in societies characterized by racial categories, and "ethnicity" to describe traditions, lifestyle, diet, and values. We also suggest using ancestry informative markers for precise characterization of individuals' biological ancestry. Understanding the sources of human genetic variation and the causes of health disparities could lead to interventions that would improve the health of all individuals.

SUBMITTER: Mersha TB

PROVIDER: S-EPMC4307746 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:ImportanceDespite recent advances in therapies for heart failure (HF), deaths from HF are increasing, with persistent disparities between Black and White adults. Recent national trends in the prevalence of HF need to be clarified to appropriately allocate resources and develop effective preventive interventions.ObjectivesTo examine the prevalence of ambulatory HF overall and by race/ethnicity and age and the temporal changes in HF prevalence between 2001 and 2016.Design, setting, and participantsThis cross-sectional study of nationally representative data collected biennially through the National Health and Nutrition Examination Survey (NHANES) from January 1, 2001, to December 31, 2016, assessed nonpregnant adults 35 years and older who self-identified as non-Hispanic Black, non-Hispanic White, or Mexican American. Data analysis was performed from November 16, 2019, to April 12, 2020.ExposuresSurvey period, race/ethnicity, and age group.Main outcomes and measuresAge-standardized prevalence was calculated within 4-year survey periods (2001-2004, 2005-2008, 2009-2012, and 2013-2016) based on self-report of ambulatory HF overall and by race/ethnicity and age group (35-64 and ≥65 years). Weighted multivariable logistic regression was used to examine trends in ambulatory HF prevalence over time by race/ethnicity and age group.ResultsA total of 26 097 participants (mean [SD] age, 55.9 [10.7] years; 13 192 [52%] female; 6519 [12%] non-Hispanic Black; and 4906 [7%] Mexican American) were studied. Overall age-standardized prevalence (per 100 000 population) of ambulatory HF was 3184 (95% CI, 2641-3728) from 2001 to 2005 and 3045 (95% CI, 2651-3438) from 2013 to 2016. The prevalence of ambulatory HF was highest among non-Hispanic Black adults: from 2013 to 2016, HF prevalence (per 100 000 population) was 5017 (95% CI, 3755-6279) among non-Hispanic Black adults, 2746 (95% CI, 2313-3179) among non-Hispanic White adults, and 2508 (95% CI, 1154-3862) among Mexican American adults. Differences between White and Black adults in HF prevalence were also present in younger and middle-aged adults (eg, 35-64 years of age in 2013-2016: 3864 [95% CI, 2369-5359] for non-Hispanic Black adults vs 1297 [95% CI, 878-1716] for non-Hispanic White adults).Conclusions and relevanceThis study found that a high burden of ambulatory HF persisted between 2001 and 2016 in the US. Disparities were most prominent by age group. Alongside prevention and aggressive management of risk factors, targeted efforts aimed at mitigating racial disparities are needed.

Project description:ImportanceHealth care disparities are well-documented among children based on race, ethnicity, and language for care. An agenda that outlines research priorities for disparities in pediatric emergency care (PEC) is lacking.ObjectiveTo investigate research priorities for disparities in PEC among medical personnel, researchers, and health care-affiliated community organizations.Design, setting, and participantsIn this survey study, a modified Delphi approach was used to investigate research priorities for disparities in PEC. An initial list of research priorities was developed by a group of experienced PEC investigators in 2021. Partners iteratively assessed the list through 2 rounds of electronic surveys using Likert-type responses in late 2021 and early 2022. Priorities were defined as achieving consensus if they received a score of highest priority or priority by at least 60% of respondents. Asynchronous engagement of participants via online web-conferencing platforms and email correspondence with electronic survey administration was used. Partners were individuals and groups involved in PEC. Participants represented interest groups, research and medical personnel organizations, health care partners, and laypersons with roles in community and family hospital advisory councils. Participants were largely from the US, with input from international PEC research networks.OutcomeConsensus agenda of research priorities to identify and address health care disparities in PEC.ResultsPEC investigators generated an initial list of 27 potential priorities. Surveys were completed by 38 of 47 partners (80.6%) and 30 of 38 partners (81.1%) in rounds 1 and 2, respectively. Among 30 respondents who completed both rounds, there were 7 family or community partners and 23 medical or research partners, including 4 international PEC research networks. A total of 12 research priorities achieved the predetermined consensus threshold: (1) systematic efforts to reduce disparities; (2) race, ethnicity, and language data collection and reporting; (3) recognizing and mitigating clinician implicit bias; (4) mental health disparities; (5) social determinants of health; (6) language and literacy; (7) acute pain-management disparities; (8) quality of care equity metrics; (9) shared decision-making; (10) patient experience; (11) triage and acuity score assignment; and (12) inclusive research participation.Conclusions and relevanceThese results suggest a research priority agenda that may be used as a guide for investigators, research networks, organizations, and funding agencies to engage in and support high-priority disparities research topics in PEC.

Dataset Information

Self-reported race/ethnicity in the age of genomic research: its potential impact on understanding health disparities.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets