Beyond race: Recruitment of diverse participants in clinical genomics research for rare disease

Undiagnosed Diseases Network Consortium

doi:10.3389/fgene.2022.949422

Beyond race: Recruitment of diverse participants in clinical genomics research for rare disease

Undiagnosed Diseases Network Consortium

Medical Social Sciences

Research output: Contribution to journal › Article › peer-review

12 Scopus citations

Abstract

Purpose: Despite recent attention to increasing diversity in clinical genomics research, researchers still struggle to recruit participants from varied sociodemographic backgrounds. We examined the experiences of parents from diverse backgrounds with enrolling their children in clinical genomics research on rare diseases. We explored the barriers and facilitators parents encountered and possible impacts of sociodemographic factors on their access to research. Methods: We utilized semi-structured interviews with parents of children participating in the Undiagnosed Diseases Network. Interview data were analyzed using comparative content analysis. Results: We interviewed 13 Hispanic, 11 non-Hispanic White, four Asian, and two biracial parents. Participants discussed different pathways to clinical genomics research for rare disease as well as how sociodemographic factors shaped families’ access. Themes focused on variation in: 1) reliance on providers to access research; 2) cultural norms around health communication; 3) the role of social capital in streamlining access; and 4) the importance of language-concordant research engagement. Conclusion: Our findings suggest that variables beyond race/ethnicity may influence access in clinical genomics research. Future efforts to diversify research participation should consider utilizing varied recruitment strategies to reach participants with diverse sociodemographic characteristics.

Original language	English (US)
Article number	949422
Journal	Frontiers in Genetics
Volume	13
DOIs	https://doi.org/10.3389/fgene.2022.949422
State	Published - Aug 22 2022

Funding

Research reported in this manuscript was supported in part by the NIH Common Fund, through the Office of Strategic Coordination/Office of the NIH Director under Award Number U01HG010218, and by a grant from the Stanford Maternal & Child Health Research Institute, award number 1233211-102-JHAJL. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the Stanford Maternal & Child Health Research Institute. Effort for JY was supported by T32HG008953 and 19SFRN34830054. Effort for MCH was supported by K01HG011341 and UL1TR003142. Effort for LF, JAB, and MTW was supported by U01HG010218. Effort for HKT was provided by UL1TR003142.

Keywords

equity
exome sequencing
genome sequencing
pediatrics
rare disease

ASJC Scopus subject areas

Molecular Medicine
Genetics
Genetics(clinical)

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10.3389/fgene.2022.949422

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title = "Beyond race: Recruitment of diverse participants in clinical genomics research for rare disease",

abstract = "Purpose: Despite recent attention to increasing diversity in clinical genomics research, researchers still struggle to recruit participants from varied sociodemographic backgrounds. We examined the experiences of parents from diverse backgrounds with enrolling their children in clinical genomics research on rare diseases. We explored the barriers and facilitators parents encountered and possible impacts of sociodemographic factors on their access to research. Methods: We utilized semi-structured interviews with parents of children participating in the Undiagnosed Diseases Network. Interview data were analyzed using comparative content analysis. Results: We interviewed 13 Hispanic, 11 non-Hispanic White, four Asian, and two biracial parents. Participants discussed different pathways to clinical genomics research for rare disease as well as how sociodemographic factors shaped families{\textquoteright} access. Themes focused on variation in: 1) reliance on providers to access research; 2) cultural norms around health communication; 3) the role of social capital in streamlining access; and 4) the importance of language-concordant research engagement. Conclusion: Our findings suggest that variables beyond race/ethnicity may influence access in clinical genomics research. Future efforts to diversify research participation should consider utilizing varied recruitment strategies to reach participants with diverse sociodemographic characteristics.",

keywords = "equity, exome sequencing, genome sequencing, pediatrics, rare disease",

author = "{Undiagnosed Diseases Network Consortium} and Young, {Jennifer L.} and Halley, {Meghan C.} and Beatriz Anguiano and Liliana Fernandez and Bernstein, {Jonathan A.} and Wheeler, {Matthew T.} and Tabor, {Holly K.}",

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year = "2022",

month = aug,

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doi = "10.3389/fgene.2022.949422",

language = "English (US)",

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AU - Undiagnosed Diseases Network Consortium

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AU - Halley, Meghan C.

AU - Anguiano, Beatriz

AU - Fernandez, Liliana

AU - Bernstein, Jonathan A.

AU - Wheeler, Matthew T.

AU - Tabor, Holly K.

PY - 2022/8/22

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N2 - Purpose: Despite recent attention to increasing diversity in clinical genomics research, researchers still struggle to recruit participants from varied sociodemographic backgrounds. We examined the experiences of parents from diverse backgrounds with enrolling their children in clinical genomics research on rare diseases. We explored the barriers and facilitators parents encountered and possible impacts of sociodemographic factors on their access to research. Methods: We utilized semi-structured interviews with parents of children participating in the Undiagnosed Diseases Network. Interview data were analyzed using comparative content analysis. Results: We interviewed 13 Hispanic, 11 non-Hispanic White, four Asian, and two biracial parents. Participants discussed different pathways to clinical genomics research for rare disease as well as how sociodemographic factors shaped families’ access. Themes focused on variation in: 1) reliance on providers to access research; 2) cultural norms around health communication; 3) the role of social capital in streamlining access; and 4) the importance of language-concordant research engagement. Conclusion: Our findings suggest that variables beyond race/ethnicity may influence access in clinical genomics research. Future efforts to diversify research participation should consider utilizing varied recruitment strategies to reach participants with diverse sociodemographic characteristics.

AB - Purpose: Despite recent attention to increasing diversity in clinical genomics research, researchers still struggle to recruit participants from varied sociodemographic backgrounds. We examined the experiences of parents from diverse backgrounds with enrolling their children in clinical genomics research on rare diseases. We explored the barriers and facilitators parents encountered and possible impacts of sociodemographic factors on their access to research. Methods: We utilized semi-structured interviews with parents of children participating in the Undiagnosed Diseases Network. Interview data were analyzed using comparative content analysis. Results: We interviewed 13 Hispanic, 11 non-Hispanic White, four Asian, and two biracial parents. Participants discussed different pathways to clinical genomics research for rare disease as well as how sociodemographic factors shaped families’ access. Themes focused on variation in: 1) reliance on providers to access research; 2) cultural norms around health communication; 3) the role of social capital in streamlining access; and 4) the importance of language-concordant research engagement. Conclusion: Our findings suggest that variables beyond race/ethnicity may influence access in clinical genomics research. Future efforts to diversify research participation should consider utilizing varied recruitment strategies to reach participants with diverse sociodemographic characteristics.

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Beyond race: Recruitment of diverse participants in clinical genomics research for rare disease

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