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Equitable Representation of Race, Ethnicity, and Ancestry Among Genomic Studies of Preterm Birth: A Systematic Review.

ABSTRACT: We conducted a systematic review of representation of race, ethnicity, and ancestry among genomic studies of preterm birth. Our data sources included CINHAL, EMBASE, MEDLINE (PubMed), and Scopus. Studies were included if they were human, genomic studies of preterm birth that analyzed greater than 1,000 genes and included race, ethnicity, and/or ancestry information. Two authors independently reviewed all abstracts and full-text manuscripts. Twelve studies were included. Ancestry was reported for 139,189 (93.6%) participants. Race was reported for 4,841 (3.3%) participants and ethnicity was reported for 7,154 (5.0%) participants. Of the 148,644 births represented in this systematic review, over 90% were reported to be of European ancestry, and race and ethnicity were not further described. When examining the smaller subset of individuals described by race alone, 2,444 individuals were identified as Black or African American and 1,853 were identified as White. Race, ethnicity, and ancestry were not reported in a uniform manner, which makes ascertainment of the genetic contribution to population differences in preterm birth inequities impossible. When reported as race, ethnicity and ancestry, Black or African American populations were under-represented among the studies in this review. Research of the genomics of preterm birth not only requires increased representation of populations that are disproportionately affected, but it also requires standardized reporting of race, ethnicity, and ancestry.

SUBMITTER: Reforma L

PROVIDER: S-EPMC10921821 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature

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Equitable Representation of Race, Ethnicity, and Ancestry Among Genomic Studies of Preterm Birth: A Systematic Review.

Reforma Liberty L Greenberg Simone S Ledyard Rachel R Burris Heather H

Cureus 20240207 2

We conducted a systematic review of representation of race, ethnicity, and ancestry among genomic studies of preterm birth. Our data sources included CINHAL, EMBASE, MEDLINE (PubMed), and Scopus. Studies were included if they were human, genomic studies of preterm birth that analyzed greater than 1,000 genes and included race, ethnicity, and/or ancestry information. Two authors independently reviewed all abstracts and full-text manuscripts. Twelve studies were included. Ancestry was reported for ...[more]

PMID: 38465134

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Project description:ImportanceImmigrant birthing people have lower rates of preterm birth compared with their US-born counterparts. This advantage and associated racial and ethnic disparities across the gestational age spectrum have not been examined nationally.ObjectiveTo examine associations of maternal nativity, ethnicity, and race with preterm birth.Design, setting, and participantsThis cohort study used birth certificates from the National Vital Statistics System to analyze in-hospital liveborn singleton births in the US between January 1, 2009, and December 31, 2018. Data were analyzed from January to June 2023.ExposureMutually exclusive nativity, ethnicity, and race subgroups were constructed using nativity (defined as US-born or non-US-born), ethnicity (defined as Hispanic or non-Hispanic), and race (defined as American Indian or Alaska Native, Asian, Black, Native Hawaiian or Other Pacific Islander, White, or other [individuals who selected other race or more than 1 race]).Main outcomes and measuresThe primary outcome of interest was preterm birth. Modified Poisson and multinomial logistic regression models quantified relative risk (RR) of preterm birth overall (<37 weeks' gestation) and by gestational category (late preterm: 34-36 weeks' gestation; moderately preterm: 29-33 weeks' gestation; and extremely preterm: <29 weeks' gestation) for each maternal nativity, ethnicity, and race subgroup compared with the largest group, US-born non-Hispanic White (hereafter, White) birthing people. The RR of preterm birth overall and by category was also measured within each racial and ethnic group by nativity. Models were adjusted for maternal demographic and medical covariates, birth year, and birth state.ResultsA total of 34 468 901 singleton live births of birthing people were analyzed, with a mean (SD) age at delivery of 28 (6) years. All nativity, ethnicity, and race subgroups had an increased adjusted risk of preterm birth compared with US-born White birthing people except for non-US-born White (adjusted RR, 0.85; 95% CI, 0.84-0.86) and Hispanic (adjusted RR, 0.98; 95% CI, 0.97-0.98) birthing people. All racially and ethnically minoritized groups had increased adjusted risks of extremely preterm birth compared with US-born White birthing people. Non-US-born individuals had a decreased risk of preterm birth within each subgroup except non-Hispanic Native Hawaiian or Other Pacific Islander individuals, in which immigrants had significantly increased risk of overall (adjusted RR, 1.07; 95% CI, 1.01-1.14), moderately (adjusted RR, 1.10; 95% CI, 0.92-1.30), and late (adjusted RR, 1.11; 95% CI, 1.02-1.22) preterm birth than their US-born counterparts.Conclusions and relevanceResults of this cohort study suggest heterogeneity of preterm birth across maternal nativity, ethnicity, and race and gestational age categories. Understanding these patterns could aid the design of targeted preterm birth interventions and policies, especially for birthing people typically underrepresented in research.

Project description:BackgroundRacial and ethnic minoritized groups are disproportionately at risk for Alzheimer's Disease (AD), but are not sufficiently recruited in AD neuroimaging research in the United States. This is important as sample composition impacts generalizability of findings, biomarker cutoffs, and treatment effects. No studies have quantified the breadth of race/ethnicity representation in the AD literature.MethodsThis review identified median race/ethnicity composition of AD neuroimaging US-based research samples available as free full-text articles on PubMed. Two types of published studies were analyzed: studies that directly report race/ethnicity data (i.e., direct studies), and studies that do not report race/ethnicity but used data from a cohort study/database that does report this information (i.e., indirect studies).ResultsDirect studies (n = 719) have median representation of 88.9% white or 87.4% Non-Hispanic white, 7.3% Black/African American, and 3.4% Hispanic/Latino ethnicity, with 0% Asian American, Native Hawaiian/Pacific Islander, and American Indian/Alaska Native, Multiracial, and Other Race participants. Cohort studies/databases (n = 44) from which indirect studies (n = 1745) derived are more diverse, with median representation of 84.2% white, 83.7% Non-Hispanic white, 11.6% Black/African American, 4.7% Hispanic/Latino, and 1.75% Asian American participants. Notably, 94% of indirect studies derive from just 10 cohort studies/databases. Comparisons of two time periods using a median split for publication year, 1994-2017 and 2018-2022, indicate that sample diversity has improved recently, particularly for Black/African American participants (3.39% from 1994-2017 and 8.29% from 2018-2022).ConclusionsThere is still underrepresentation of all minoritized groups relative to Census data, especially for Hispanic/Latino and Asian American individuals. The AD neuroimaging literature will benefit from increased representative recruitment of ethnic/racial minorities. More transparent reporting of race/ethnicity data is needed.

Project description:ImportanceSevere morbidity in very preterm infants is associated with profound clinical implications on development and life-course health. However, studies of racial/ethnic disparities in severe neonatal morbidities are scant and suggest that these disparities are modest or null, which may be an underestimation resulting from the analytic approach used.ObjectiveTo estimate racial/ethnic differences in severe morbidities among very preterm infants.Design, setting, and participantsThis population-based retrospective cohort study was conducted in New York City, New York, using linked birth certificate, mortality data, and hospital discharge data from January 1, 2010, through December 31, 2014. Infants born before 24 weeks' gestation, with congenital anomalies, and with missing data were excluded. Racial/ethnic disparities in very preterm birth morbidities were estimated through 2 approaches, conventional analysis and fetuses-at-risk analysis. The conventional analysis used log-binomial regression to estimate the relative risk of 4 severe neonatal morbidities for the racial/ethnic groups. For the fetuses-at-risk analysis, Cox proportional hazards regression with death as competing risk was used to estimate subhazard ratios associating race/ethnicity with each outcome. Estimates were adjusted for sociodemographic factors and maternal morbidities. Data were analyzed from September 5, 2017, to May 21, 2018.Main outcomes and measuresFour morbidity outcomes were defined using International Classification of Diseases, Ninth Revision, diagnosis and procedure codes: necrotizing enterocolitis, intraventricular hemorrhage, bronchopulmonary dysplasia, and retinopathy of prematurity.ResultsIn total, 582 297 infants were included in this study. Of these infants, 285 006 were female (48.9%) and 297 291 were male (51.0%). Using the conventional approach in the very preterm birth subcohort, black compared with white infants had an increased risk of only bronchopulmonary dysplasia (adjusted risk ratio [aRR], 1.34; 95% CI, 1.09-1.64) and a borderline increased risk of necrotizing enterocolitis (aRR, 1.39; 95% CI, 1.00-1.93). Hispanic infants had a borderline increased risk of necrotizing enterocolitis (aRR, 1.39; 95% CI, 0.98-1.96), and Asian infants had an increased risk of retinopathy of prematurity (aRR, 1.85; 95% CI, 1.15-2.97). In the fetuses-at-risk analysis, black infants had a 4.40 times higher rate of necrotizing enterocolitis (95% CI, 2.98-6.51), a 2.73 times higher rate of intraventricular hemorrhage (95% CI, 1.63-4.57), a 4.43 times higher rate of bronchopulmonary dysplasia (95% CI, 2.88-6.81), and a 2.98 times higher rate of retinopathy of prematurity (95% CI, 2.01-4.40). Hispanic infants had an approximately 2 times higher rate for all outcomes, and Asian infants had increased risk only for retinopathy of prematurity (adjusted hazard ratio, 2.43; 95% CI, 1.43-4.11).Conclusions and relevanceIn this study, racial/ethnic disparities in neonatal morbidities among very preterm infants appear to be sizable, but may have been underestimated in previous studies, and may have implications for the future. Understanding these racial/ethnic disparities is important, as they may contribute to inequalities in health and development later in the child's life.

Project description:BackgroundSystemic progress in improving trial representation is uncertain, and previous analyses of minority trial participation have been limited to small cohorts with limited exploration of driving factors.MethodsWe analyzed detailed trial records from all US clinical trials registered in ClinicalTrials.gov from March 2000 to March 2020. Minority enrollment was compared to 2010 US Census demographic estimates using Wilcoxon test. We utilized logistic regression and generalized linear regression with a logit link to assess the association of possible drivers (including trials' funding source, size, phase, and design) with trials' disclosure of and amount of minority enrollment respectively.FindingsAmong 20,692 US-based trials with reported results (representing ~4·76 million enrollees), only 43% (8,871/20,692) reported any race/ethnicity data. The majority of enrollees were White (median 79·7%; interquartile range [IQR] 61·9-90·0%), followed by Black (10·0%; IQR 2·5-23·5%), Hispanic/Latino (6·0%; IQR 0·43-15·4%), Asian (1·0%; IQR 0·0-4·1%), and American Indian (0·0%; IQR 0·0-0·2%). Median combined enrollment of minority race/ethnicity groups (Black, Hispanic/Latino, Asian, American Indian, Other/Multi) was below census estimates (27·6%) (p<0·001) however increased at an annual rate of 1·7%. Industry and Academic funding were negatively associated with race/ethnicity reporting (Industry adjusted odds ratio [aOR]: 0·42, 95% confidence interval [CI]: 0·38 to 0·46, p<0.0001; Academic aOR: 0·45, CI: 0·41 to 0·50, p<0.0001). Industry also had a negative association with the proportion of minority ethnicity enrollees (aOR: 0·69, CI: 0·60 to 0·79) compared to US Government-funded trials.InterpretationOver the past two decades, the majority of US trials in ClinicalTrials.gov do not report race/ethnicity enrollment data, and minorities are underrepresented in trials with modest improvement over time.FundingStanford Medical Scholars Research Funding, the National Heart, Lung, and Blood Institute, NIH (1K01HL144607) and the American Heart Association/Robert Wood Johnson Medical Faculty Development Program.

Dataset Information

Equitable Representation of Race, Ethnicity, and Ancestry Among Genomic Studies of Preterm Birth: A Systematic Review.

Publications

Equitable Representation of Race, Ethnicity, and Ancestry Among Genomic Studies of Preterm Birth: A Systematic Review.

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