Use of race, ethnicity, and ancestry data in health research

Lu, Clara; Ahmed, Rabeeyah; Lamri, Amel; Anand, Sonia S.

doi:10.31219/osf.io/z4xty

Cited by 5 publications

(2 citation statements)

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“…Although these terms represent distinct concepts, they are also often used interchangeably and inconsistently in reporting medical research. 79,80 In the United States, race categories are routinely defined based on the Office of Management and Budget's Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity. 81 Outside the United States, the concept of race has been largely replaced by national ancestry, 2 and some have suggested the goal of replacing the use of race with genetic ancestry.…”

Section: Reporting Race and Ethnicity Datamentioning

confidence: 99%

“…Currently, no universal definitions of race, ethnicity, or ancestry exist. Although these terms represent distinct concepts, they are also often used interchangeably and inconsistently in reporting medical research 79,80 . In the United States, race categories are routinely defined based on the Office of Management and Budget's Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity 81 .…”

Section: Feasibility Of Diverse Trials and A Path Forwardmentioning

confidence: 99%

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A Review of the Evolving Landscape of Inclusive Research and Improved Clinical Trial Access

Mohan¹,

Freedman²

2023

Clin Pharma and Therapeutics

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Current clinical research does not reflect the diversity of patient populations, despite continued recommendations to increase enrollment of under‐represented racial and ethnic groups. The ramifications of this lack of trial diversity are important because of potential differences between races and ethnicities in response to therapies, which have been observed for drugs across indications. Nonrepresentative research populations limit the generalizability of study results, which may lead to questions about safety and efficacy in certain subgroups of patients and hinder regulators, healthcare providers, and patients in their ability to adequately consider the benefits and risks of a therapeutic treatment across all populations. Renewed efforts to address healthcare disparities and increase diversity in clinical trials have demonstrated that inclusive trials are achievable and can provide scientifically rigorous results, and, thus, should stimulate greater action across all stakeholders. Ensuring that studies throughout the clinical development process include representative populations is a scientific imperative to advance health equity, racial justice, and trust in the safety and efficacy of medical therapies. This article reviews the long‐standing lack of diversity and barriers to enrollment of diverse and representative populations in clinical trials, outlines the current evolving trial landscape and the efforts of stakeholders, and provides examples from scientifically rigorous inclusive trials. The goal is to share learnings in a wider context of opportunities to enhance diversity, equity, and inclusion in clinical development while ensuring the safety and efficacy of medical therapies in all populations of patients, and in doing so, provide wider patient access to therapeutic treatments.

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Section: Reporting Race and Ethnicity Datamentioning

confidence: 99%

Section: Feasibility Of Diverse Trials and A Path Forwardmentioning

confidence: 99%

A Review of the Evolving Landscape of Inclusive Research and Improved Clinical Trial Access

Mohan¹,

Freedman²

2023

Clin Pharma and Therapeutics

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Genetic Ancestry and Self-Reported “Skin Color/Race” in the Urban Admixed Population of São Paulo City, Brazil

Pereira,

de Souza,

Neyra

et al. 2024

Genes

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Epidemiological studies frequently classify groups based on phenotypes like self-reported skin color/race, which inaccurately represent genetic ancestry and may lead to misclassification, particularly among individuals of multiracial backgrounds. This study aimed to characterize both global and local genome-wide genetic ancestries and to assess their relationship with self-reported skin color/race in an admixed population of Sao Paulo city. We analyzed 226,346 single-nucleotide polymorphisms from 841 individuals participating in the population-based ISA-Nutrition study. Our findings confirmed the admixed nature of the population, demonstrating substantial European, significant Sub-Saharan African, and minor Native American ancestries, irrespective of skin color. A correlation was observed between global genetic ancestry and self-reported color-race, which was more evident in the extreme proportions of African and European ancestries. Individuals with higher African ancestry tended to identify as Black, those with higher European ancestry tended to identify as White, and individuals with higher Native American ancestry were more likely to self-identify as Mixed, a group with diverse ancestral compositions. However, at the individual level, this correlation was notably weak, and no deviations were observed for specific regions throughout the individual’s genome. Our findings emphasize the significance of accurately defining and thoroughly analyzing race and ancestry, especially within admixed populations.

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Exploring the Relationship between Built Environment Attributes and Physical Activity in Lower-Income Aging Adults: Preliminary Insights from a Multi-Level Trial

Walia,

King,

Campero

et al. 2024

IJERPH

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The built environment has been linked to physical activity (PA) behaviors, yet there is limited knowledge of this association among lower-income midlife and older adults who are insufficiently active. The present cross-sectional study utilized baseline data collected between October 2017 and November 2019 from a clustered randomized controlled trial to determine how built environment attributes were associated with PA behaviors among midlife and older adults (n = 255) residing in or near affordable housing sites (n = 10). At each site, perceptions of the built environment were collected and scored at the participant level via the abbreviated Neighborhood Environment Walkability Survey (NEWS-A), while objective built environment attributes were measured and scored by trained research staff using the Physical Activity Resource Assessment (PARA). Multiple PA behaviors—walking, total PA, and moderate-to-vigorous PA (MVPA) (min/wk)—were measured using the validated Community Healthy Activities Model Program for Seniors (CHAMPS) questionnaire. Adjusted linear regression models examined associations between NEWS-A measures and PA behaviors, and site-level correlations between PARA measures and PA behaviors were examined using Spearman’s rank correlations. At the participant level, adjusted models revealed that a one point increase in the NEWS-A aesthetics score was associated with a 57.37 min/wk increase in walking (β = 57.37 [95% CI: 20.84, 93.91], p = 0.002), with a similar association observed for street connectivity and MVPA (β = 24.31 min/wk [95% CI: 3.22, 45.41], p = 0.02). At the site level, MVPA was positively correlated with the quality of the features of local, PA-supportive environmental resources (ρ = 0.82, p = 0.004). Findings indicate that participant- and site-level measures of the built environment may play a role in promoting PA behavior among this demographic and similar populations. Results also suggest that improvements in aesthetic attributes and street connectivity, along with enhancing the quality of local, PA-supportive environmental resources, may be effective strategies for promoting physical activity among lower-income midlife and older adults.

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Use of race, ethnicity, and ancestry data in health research

Cited by 5 publications

References 0 publications

A Review of the Evolving Landscape of Inclusive Research and Improved Clinical Trial Access

A Review of the Evolving Landscape of Inclusive Research and Improved Clinical Trial Access

Genetic Ancestry and Self-Reported “Skin Color/Race” in the Urban Admixed Population of São Paulo City, Brazil

Exploring the Relationship between Built Environment Attributes and Physical Activity in Lower-Income Aging Adults: Preliminary Insights from a Multi-Level Trial

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