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包容遗传学计划:通过产前以患者为中心的咨询保护生殖自主权免受偏见影响。

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

机构信息

Boston University Chobanian & Avedisian School of Medicine, Boston, MA, USA.

Department of Medicine, Boston University Chobanian & Avedisian School of Medicine, Boston MA, USA.

出版信息

HGG Adv. 2023 Aug 1;4(4):100228. doi: 10.1016/j.xhgg.2023.100228. eCollection 2023 Oct 12.

DOI:10.1016/j.xhgg.2023.100228
PMID:37646012
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10461018/
Abstract

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 ( = -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.

摘要

临床医生的偏见会对边缘化群体获得的医疗保健产生负面影响。在这项研究中,我们探讨了影响临床医生和受训者对智力障碍个体偏见的因素,以及这些偏见对产前基因检测环境下临床判断的影响。具体而言,我们研究了对残疾风险较高的胎儿的偏见。我们将遗传专家与非专家进行了比较。这项基于网络的研究包括临床案例、内隐联想测验(IAT)和一个教育模块。通过机构或专业协会招募了 595 名参与者。我们进行了统计分析,包括回归模型,控制关键人口统计学特征,以分析推荐模式和模块后的变化程度。当患者不考虑终止妊娠时,遗传专业知识与适当的检测推荐高度相关(模块前 r = 1.784,模块后 r = 1.502,p < 0.01)。影响模块前测试推荐的因素包括年龄增加(r = -0.029,p < 0.05)、宗教信仰度高(r = 0.525,p < 0.05)和参与者个人对检测的反对(r = 1.112,p < 0.01)。在教育模块之后,没有遗传专业知识的参与者的反应得到了改善(β = -4.435,p < 0.01)。在模块后,42%回答不当的非专家改变了他们的答案,以符合指南。个人偏见,以及结构性和制度性偏见,渗透到计划生育过程中,显著降低了护理质量。我们在这里证明,反偏见培训是有效的,特别是对非专家提供者,它可以改善对智力障碍个体的护理。这种基于证据的培训可以帮助提供者做出适当的遗传咨询建议。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9a7b/10461018/a4c1b36a1ff7/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9a7b/10461018/a4c1b36a1ff7/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9a7b/10461018/a4c1b36a1ff7/gr1.jpg

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HGG Adv. 2023 Aug 1;4(4):100228. doi: 10.1016/j.xhgg.2023.100228. eCollection 2023 Oct 12.
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本文引用的文献

1
The Impending Crisis of Access to Safe Abortion Care in the US.美国安全堕胎护理可及性迫在眉睫的危机。
JAMA Intern Med. 2022 Aug 1;182(8):793-795. doi: 10.1001/jamainternmed.2022.2893.
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Navigating Loss of Abortion Services - A Large Academic Medical Center Prepares for the Overturn of .应对堕胎服务的缺失——一家大型学术医疗中心为(某项法案)的推翻做准备 。 (注:原文最后“of”后面内容缺失,翻译只能根据现有内容尽量完整表达)
N Engl J Med. 2022 Jun 2;386(22):2061-2064. doi: 10.1056/NEJMp2206246. Epub 2022 May 11.
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US Physicians' Knowledge About The Americans With Disabilities Act And Accommodation Of Patients With Disability.
美国医生对《美国残疾人法案》的了解及对残疾患者的照顾。
Health Aff (Millwood). 2022 Jan;41(1):96-104. doi: 10.1377/hlthaff.2021.01136.
4
The opinions and experiences of people with intellectual disability regarding genetic testing and genetic medicine: A systematic review.智力残疾人士对基因检测和基因医学的意见和经验:系统评价。
Genet Med. 2022 Mar;24(3):535-548. doi: 10.1016/j.gim.2021.11.013. Epub 2021 Nov 20.
5
Project Inclusive Genetics: Exploring the impact of patient-centered counseling training on physical disability bias in the prenatal setting.包容遗传学计划:探索以患者为中心的咨询培训对产前环境中身体残疾偏见的影响。
PLoS One. 2021 Aug 5;16(8):e0255722. doi: 10.1371/journal.pone.0255722. eCollection 2021.
6
Physicians' Perceptions Of People With Disability And Their Health Care.医生对残疾人和他们的医疗保健的看法。
Health Aff (Millwood). 2021 Feb;40(2):297-306. doi: 10.1377/hlthaff.2020.01452.
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Genet Med. 2019 Nov;21(11):2422-2430. doi: 10.1038/s41436-019-0548-4. Epub 2019 May 21.
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Disability inclusion in precision medicine research: a first national survey.精准医学研究中的残疾包容:首次全国调查。
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