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Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling

Clinician bias negatively impacts the healthcare received by marginalized communities. In this study, we explored factors that influence clinician and trainee bias against individuals with intellectual disabilities and its impact on clinical judgment in prenatal genetic testing settings. Specificall...

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Autores principales: Jungels, Apolline, Demers, Lindsay, Ford, Eric, Stevens, Blair K., Sabatello, Maya, Dasgupta, Shoumita
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10461018/
https://www.ncbi.nlm.nih.gov/pubmed/37646012
http://dx.doi.org/10.1016/j.xhgg.2023.100228
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author Jungels, Apolline
Demers, Lindsay
Ford, Eric
Stevens, Blair K.
Sabatello, Maya
Dasgupta, Shoumita
author_facet Jungels, Apolline
Demers, Lindsay
Ford, Eric
Stevens, Blair K.
Sabatello, Maya
Dasgupta, Shoumita
author_sort Jungels, Apolline
collection PubMed
description Clinician bias negatively impacts the healthcare received by marginalized communities. In this study, we explored factors that influence clinician and trainee bias against individuals with intellectual disabilities and its impact on clinical judgment in prenatal genetic testing settings. Specifically, we examined bias toward a fetus with a higher chance of developing a disability. We compared genetics specialists with their non-expert counterparts. This web-based study included clinical vignettes, implicit association tests (IATs), and an educational module. 595 participants were recruited via their institution or professional society. We conducted statistical analyses, including regression models controlling for key demographic characteristics, to analyze recommendation patterns and degree of change after the module. Genetics expertise strongly correlated with appropriate testing recommendation when the patient would not consider pregnancy termination (r = 1.784 pre-module, r = 1.502 post-module, p < 0.01). Factors that influenced pre-module recommendation to test include increased age (r = −0.029, p < 0.05), high religiosity (r = 0.525, p < 0.05), and participant personal preference against testing (r = 1.112, p < 0.01). Responses among participants without genetics expertise improved after the educational module (Z = −4.435, p < 0.01). 42% of non-experts who answered inappropriately changed their answer to match guidelines after the module. Individual bias, along with structural and institutional bias, permeates family planning encounters and significantly decreases quality of care. We demonstrate here that anti-bias training is effective, particularly for non-expert providers, and it can improve the care provided to individuals with intellectual disability. Evidence-based training such as this one can help providers make appropriate genetic counseling recommendations.
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spelling pubmed-104610182023-08-29 Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling Jungels, Apolline Demers, Lindsay Ford, Eric Stevens, Blair K. Sabatello, Maya Dasgupta, Shoumita HGG Adv Article Clinician bias negatively impacts the healthcare received by marginalized communities. In this study, we explored factors that influence clinician and trainee bias against individuals with intellectual disabilities and its impact on clinical judgment in prenatal genetic testing settings. Specifically, we examined bias toward a fetus with a higher chance of developing a disability. We compared genetics specialists with their non-expert counterparts. This web-based study included clinical vignettes, implicit association tests (IATs), and an educational module. 595 participants were recruited via their institution or professional society. We conducted statistical analyses, including regression models controlling for key demographic characteristics, to analyze recommendation patterns and degree of change after the module. Genetics expertise strongly correlated with appropriate testing recommendation when the patient would not consider pregnancy termination (r = 1.784 pre-module, r = 1.502 post-module, p < 0.01). Factors that influenced pre-module recommendation to test include increased age (r = −0.029, p < 0.05), high religiosity (r = 0.525, p < 0.05), and participant personal preference against testing (r = 1.112, p < 0.01). Responses among participants without genetics expertise improved after the educational module (Z = −4.435, p < 0.01). 42% of non-experts who answered inappropriately changed their answer to match guidelines after the module. Individual bias, along with structural and institutional bias, permeates family planning encounters and significantly decreases quality of care. We demonstrate here that anti-bias training is effective, particularly for non-expert providers, and it can improve the care provided to individuals with intellectual disability. Evidence-based training such as this one can help providers make appropriate genetic counseling recommendations. Elsevier 2023-08-01 /pmc/articles/PMC10461018/ /pubmed/37646012 http://dx.doi.org/10.1016/j.xhgg.2023.100228 Text en © 2023 The Authors https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
spellingShingle Article
Jungels, Apolline
Demers, Lindsay
Ford, Eric
Stevens, Blair K.
Sabatello, Maya
Dasgupta, Shoumita
Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling
title Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling
title_full Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling
title_fullStr Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling
title_full_unstemmed Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling
title_short Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling
title_sort project inclusive genetics: protecting reproductive autonomy from bias via prenatal patient-centered counseling
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10461018/
https://www.ncbi.nlm.nih.gov/pubmed/37646012
http://dx.doi.org/10.1016/j.xhgg.2023.100228
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