{"title":"Epistemic injustice, healthcare disparities and the missing pipeline: reflections on the exclusion of disabled scholars from health research.","authors":"Joanne Hunt, Charlotte Blease","doi":"10.1136/jme-2023-109837","DOIUrl":null,"url":null,"abstract":"<p><p>People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within the disability community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as 'strategies of exclusion'. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":null,"pages":null},"PeriodicalIF":3.3000,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Medical Ethics","FirstCategoryId":"98","ListUrlMain":"https://doi.org/10.1136/jme-2023-109837","RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"ETHICS","Score":null,"Total":0}
引用次数: 0
Abstract
People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within the disability community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as 'strategies of exclusion'. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy.
残疾人在健康方面存在多种形式的差异,在更广泛的社会范围内也存在差异;需要开展重点明确的研究,为更具包容性、安全和有效的医疗保健实践和政策提供信息。通过生活经验,残疾人能够很好地发现并坚持不懈地寻求现有医疗服务中存在的问题和机遇,而这些问题和机遇可能会被大部分非残疾人研究团体所忽视。因此,学术界可以发挥重要作用,揭示来自残疾人群体的观点和见解,并与政策决策相结合,使这些观点和见解有更好的机会融入医疗保健内外的公共生活结构中。然而,尽管更大的包容性可以带来潜在的益处,但在本文中,我们将描述英国学术界中希望从事健康研究的残障人士所面临的障碍。第一位作者是一位精力受限者,在英国大部分时间只能待在家里,三年多来,她一直在努力寻找一个无障碍的博士项目。首先,我们将讨论置于健康研究中的认识论不公正这一更广阔的视角中。其次,我们考虑了残疾研究人员认识论不公正的证据,主要关注哲学家基德和卡瑞尔(Kidd and Carel, 2017, p 184)所描述的 "排斥策略"。第三,我们提出了克服这些障碍的建议,以改善残疾研究人员在学术界的发展渠道。
期刊介绍:
Journal of Medical Ethics is a leading international journal that reflects the whole field of medical ethics. The journal seeks to promote ethical reflection and conduct in scientific research and medical practice. It features articles on various ethical aspects of health care relevant to health care professionals, members of clinical ethics committees, medical ethics professionals, researchers and bioscientists, policy makers and patients.
Subscribers to the Journal of Medical Ethics also receive Medical Humanities journal at no extra cost.
JME is the official journal of the Institute of Medical Ethics.