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“There’s not much we can do…” researcher-level barriers to the inclusion of underrepresented participants in translational research

INTRODUCTION: The lack of diversity in health research participation has serious consequences for science as well as ethics. While there is growing interest in solving the problem, much of the work to date focuses on attitudes of distrust among members of underrepresented communities. However, there...

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Autores principales: Passmore, Susan Racine, Kisicki, Abby, Gilmore-Bykovskyi, Andrea, Green-Harris, Gina, Edwards, Dorothy Farrar
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Cambridge University Press 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8807123/
https://www.ncbi.nlm.nih.gov/pubmed/35154814
http://dx.doi.org/10.1017/cts.2021.876
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author Passmore, Susan Racine
Kisicki, Abby
Gilmore-Bykovskyi, Andrea
Green-Harris, Gina
Edwards, Dorothy Farrar
author_facet Passmore, Susan Racine
Kisicki, Abby
Gilmore-Bykovskyi, Andrea
Green-Harris, Gina
Edwards, Dorothy Farrar
author_sort Passmore, Susan Racine
collection PubMed
description INTRODUCTION: The lack of diversity in health research participation has serious consequences for science as well as ethics. While there is growing interest in solving the problem, much of the work to date focuses on attitudes of distrust among members of underrepresented communities. However, there is also a pressing need to understand existing barriers within the cultural and structural context of researchers and research staff. METHODS: This study adopted a sequential exploratory mixed-methods design to allow for a focused examination of barriers to inclusive research recruitment among researchers and staff. Barriers first identified from an initial quantitative investigation (web-based survey; n = 279) were further explored through qualitative methods (key informant interviews; n = 26). Participants were investigators and research team members in both phases of the study. RESULTS: The survey revealed a paradoxical disconnect between participants’ reported belief in the abstract value of diversity in research participation (87.1% important/extremely important) and belief in it as an important goal in their own specific research (38.3% important/extremely important). Interviews reveal that researchers and staff perceive many barriers to the recruitment of members of underrepresented groups and hold a general view of diversity in research as an impractical, even unattainable, goal. CONCLUSIONS: It is crucial that principal investigators not only understand the consequences of the continued exclusion of marginalized groups from research but also implement strategies to reverse this trend and communicate with research staff on the issue. While individual bias does play a role (ex: a priori assumptions about the willingness or ability of members of underrepresented groups to participate), these behaviors are part of a larger context of systemic racism.
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spelling pubmed-88071232022-02-10 “There’s not much we can do…” researcher-level barriers to the inclusion of underrepresented participants in translational research Passmore, Susan Racine Kisicki, Abby Gilmore-Bykovskyi, Andrea Green-Harris, Gina Edwards, Dorothy Farrar J Clin Transl Sci Research Article INTRODUCTION: The lack of diversity in health research participation has serious consequences for science as well as ethics. While there is growing interest in solving the problem, much of the work to date focuses on attitudes of distrust among members of underrepresented communities. However, there is also a pressing need to understand existing barriers within the cultural and structural context of researchers and research staff. METHODS: This study adopted a sequential exploratory mixed-methods design to allow for a focused examination of barriers to inclusive research recruitment among researchers and staff. Barriers first identified from an initial quantitative investigation (web-based survey; n = 279) were further explored through qualitative methods (key informant interviews; n = 26). Participants were investigators and research team members in both phases of the study. RESULTS: The survey revealed a paradoxical disconnect between participants’ reported belief in the abstract value of diversity in research participation (87.1% important/extremely important) and belief in it as an important goal in their own specific research (38.3% important/extremely important). Interviews reveal that researchers and staff perceive many barriers to the recruitment of members of underrepresented groups and hold a general view of diversity in research as an impractical, even unattainable, goal. CONCLUSIONS: It is crucial that principal investigators not only understand the consequences of the continued exclusion of marginalized groups from research but also implement strategies to reverse this trend and communicate with research staff on the issue. While individual bias does play a role (ex: a priori assumptions about the willingness or ability of members of underrepresented groups to participate), these behaviors are part of a larger context of systemic racism. Cambridge University Press 2021-11-11 /pmc/articles/PMC8807123/ /pubmed/35154814 http://dx.doi.org/10.1017/cts.2021.876 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.
spellingShingle Research Article
Passmore, Susan Racine
Kisicki, Abby
Gilmore-Bykovskyi, Andrea
Green-Harris, Gina
Edwards, Dorothy Farrar
“There’s not much we can do…” researcher-level barriers to the inclusion of underrepresented participants in translational research
title “There’s not much we can do…” researcher-level barriers to the inclusion of underrepresented participants in translational research
title_full “There’s not much we can do…” researcher-level barriers to the inclusion of underrepresented participants in translational research
title_fullStr “There’s not much we can do…” researcher-level barriers to the inclusion of underrepresented participants in translational research
title_full_unstemmed “There’s not much we can do…” researcher-level barriers to the inclusion of underrepresented participants in translational research
title_short “There’s not much we can do…” researcher-level barriers to the inclusion of underrepresented participants in translational research
title_sort “there’s not much we can do…” researcher-level barriers to the inclusion of underrepresented participants in translational research
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8807123/
https://www.ncbi.nlm.nih.gov/pubmed/35154814
http://dx.doi.org/10.1017/cts.2021.876
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