{"title":"罕见病、不了解疾病、诊断不足疾病患者的认知不公,以及这些疾病带来的认知优势。","authors":"Mar Rosàs Tosas","doi":"10.1007/s11019-025-10285-4","DOIUrl":null,"url":null,"abstract":"<p><p>Fricker (Epistemic Injustice. Power and the Ethics of Knowing, Oxford University Press, Oxford, 2007) coined the term epistemic injustice to refer to the downgrading of credibility of speakers provoked either by prejudices-which she labeled testimonial injustice-or by a gap in interpretative resources that account for a given phenomenon-which she referred to as hermeneutical injustice. This paper reviews the existing literature on how patients with rare diseases, poorly understood diseases, and underdiagnosed diseases are questioned by the healthcare practitioners who assist them in order to explore how they suffer from both these types of epistemic injustice. At the same time, the paper argues that the very epistemic marginalization suffered by these patients actually grants them some epistemic advantages over patients with better-known diseases, and even some meta-epistemic advantages-that is, a deeper understanding of how the very taxonomy that marginalizes or excludes them is, to some extent, a sociocultural construction. The paper therefore applies the notion of \"epistemic advantage\", coined by contemporary standpoint theorists, to the field of healthcare.</p>","PeriodicalId":47449,"journal":{"name":"Medicine Health Care and Philosophy","volume":" ","pages":""},"PeriodicalIF":3.1000,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Epistemic injustice suffered by patients with rare diseases, poorly understood diseases, and underdiagnosed diseases, and the epistemic advantage granted by these diseases.\",\"authors\":\"Mar Rosàs Tosas\",\"doi\":\"10.1007/s11019-025-10285-4\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Fricker (Epistemic Injustice. Power and the Ethics of Knowing, Oxford University Press, Oxford, 2007) coined the term epistemic injustice to refer to the downgrading of credibility of speakers provoked either by prejudices-which she labeled testimonial injustice-or by a gap in interpretative resources that account for a given phenomenon-which she referred to as hermeneutical injustice. This paper reviews the existing literature on how patients with rare diseases, poorly understood diseases, and underdiagnosed diseases are questioned by the healthcare practitioners who assist them in order to explore how they suffer from both these types of epistemic injustice. At the same time, the paper argues that the very epistemic marginalization suffered by these patients actually grants them some epistemic advantages over patients with better-known diseases, and even some meta-epistemic advantages-that is, a deeper understanding of how the very taxonomy that marginalizes or excludes them is, to some extent, a sociocultural construction. The paper therefore applies the notion of \\\"epistemic advantage\\\", coined by contemporary standpoint theorists, to the field of healthcare.</p>\",\"PeriodicalId\":47449,\"journal\":{\"name\":\"Medicine Health Care and Philosophy\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":3.1000,\"publicationDate\":\"2025-07-29\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Medicine Health Care and Philosophy\",\"FirstCategoryId\":\"98\",\"ListUrlMain\":\"https://doi.org/10.1007/s11019-025-10285-4\",\"RegionNum\":2,\"RegionCategory\":\"哲学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"ETHICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Medicine Health Care and Philosophy","FirstCategoryId":"98","ListUrlMain":"https://doi.org/10.1007/s11019-025-10285-4","RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"ETHICS","Score":null,"Total":0}
Epistemic injustice suffered by patients with rare diseases, poorly understood diseases, and underdiagnosed diseases, and the epistemic advantage granted by these diseases.
Fricker (Epistemic Injustice. Power and the Ethics of Knowing, Oxford University Press, Oxford, 2007) coined the term epistemic injustice to refer to the downgrading of credibility of speakers provoked either by prejudices-which she labeled testimonial injustice-or by a gap in interpretative resources that account for a given phenomenon-which she referred to as hermeneutical injustice. This paper reviews the existing literature on how patients with rare diseases, poorly understood diseases, and underdiagnosed diseases are questioned by the healthcare practitioners who assist them in order to explore how they suffer from both these types of epistemic injustice. At the same time, the paper argues that the very epistemic marginalization suffered by these patients actually grants them some epistemic advantages over patients with better-known diseases, and even some meta-epistemic advantages-that is, a deeper understanding of how the very taxonomy that marginalizes or excludes them is, to some extent, a sociocultural construction. The paper therefore applies the notion of "epistemic advantage", coined by contemporary standpoint theorists, to the field of healthcare.
期刊介绍:
Medicine, Health Care and Philosophy: A European Journal is the official journal of the European Society for Philosophy of Medicine and Health Care. It provides a forum for international exchange of research data, theories, reports and opinions in bioethics and philosophy of medicine. The journal promotes interdisciplinary studies, and stimulates philosophical analysis centered on a common object of reflection: health care, the human effort to deal with disease, illness, death as well as health, well-being and life. Particular attention is paid to developing contributions from all European countries, and to making accessible scientific work and reports on the practice of health care ethics, from all nations, cultures and language areas in Europe.