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Un/Diagnosed: Family Experience of Genomic Diagnoses and the Re-Making of (Rare) Disease in the UK. 未诊断：英国基因组诊断和（罕见）疾病再造的家庭经验》。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2024-10-02 Epub Date: 2024-11-11 DOI: 10.1080/01459740.2024.2420117
Alessia Costa
{"title":"Un/Diagnosed: Family Experience of Genomic Diagnoses and the Re-Making of (Rare) Disease in the UK.","authors":"Alessia Costa","doi":"10.1080/01459740.2024.2420117","DOIUrl":"https://doi.org/10.1080/01459740.2024.2420117","url":null,"abstract":"<p><p>Drawing on three years of ethnographic engagement with the rare disease community in the United Kingdom and Europe, this article explores the experiences of families who seek and (sometimes) receive a genomic diagnosis. I trace how families learn to enact unexplained symptoms and common disabilities as rare, genetic disorders, and how they coordinate genomic and non-genomic ways of \"doing\" disease within and beyond the clinic. These experiences shed light on the socio-material processes through which genomic variants become \"diseases\" (or fail to do so), and on the implications for those whose lives have become entangled with the genomic agenda.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":"43 7","pages":"655-668"},"PeriodicalIF":1.5,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142630427","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Not-Quite-Dead: Ontological Careographies and the Ambiguous Fetal Body in the Context of Disability-Selective Pregnancy Termination in Austria. Not-Quite-Dead: Ontological Careographies and the Ambiguous Fetal Body in the Context of Disability-Selective Pregnancy Termination in Austria.
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2024-10-02 Epub Date: 2024-11-11 DOI: 10.1080/01459740.2024.2410249
Veronika Siegl
{"title":"Not-Quite-Dead: Ontological Careographies and the Ambiguous Fetal Body in the Context of Disability-Selective Pregnancy Termination in Austria.","authors":"Veronika Siegl","doi":"10.1080/01459740.2024.2410249","DOIUrl":"https://doi.org/10.1080/01459740.2024.2410249","url":null,"abstract":"<p><p>Starting from the unsettling ambiguity of the aborted but not-quite-dead fetus, I scrutinize how clinical staff interpret, decide on, and grapple with fetal life signs following disability-selective pregnancy terminations in Austria. Understanding their practices as attempts to provide certainty in a context of ontological and moral uncertainty, I conceptualize them as acts of care that contribute to an intricate \"ontological careography\" and facilitate classifying the not-quite-dead as an already-dead fetus. I show that the interpretation of life signs is not a simple matter of biological \"facts\" - what is ultimately at stake is the active making of life and death.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":"43 7","pages":"569-582"},"PeriodicalIF":1.5,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142630425","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Healing with Ayahuasca the Plant Teacher: Psychedelic Metaphoricity and Polyontologies. 用植物老师死藤水治疗：迷幻隐喻和多本体论。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2024-10-02 Epub Date: 2024-10-07 DOI: 10.1080/01459740.2024.2410969
Alex K Gearin
{"title":"Healing with Ayahuasca the Plant Teacher: Psychedelic Metaphoricity and Polyontologies.","authors":"Alex K Gearin","doi":"10.1080/01459740.2024.2410969","DOIUrl":"10.1080/01459740.2024.2410969","url":null,"abstract":"<p><p>Shamans, neo-shamans, atheists, and others describe gaining special knowledge from drinking ayahuasca, supporting the cross-cultural idea of ayahuasca as a plant teacher. While secular enthusiasts interpret this metaphorically, animists and others take it literally. This article examines ontological collisions at a healing retreat in the Peruvian Amazon, considering Shipibo shamans and their international clients. It explores how embodied experiences, such as purging and visions, inform both literal and metaphorical views of healing and illness. By addressing incommensurable ontologies, the article highlights how a polyontological framework approaches ontological collision without necessarily privileging specific ways of knowing.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"583-597"},"PeriodicalIF":1.5,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142382046","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Framing the Labor of Paid Egg Donors in Iran: Marginality, Gendered Care, and Divine Reward. 伊朗有偿捐卵者的劳动框架：边缘化、性别关怀和天赐奖赏》（Marginality, Gendered Care, and Divine Reward.
IF 2.3 3区 社会学
Medical Anthropology Pub Date : 2024-09-10 DOI: 10.1080/01459740.2024.2395291
Tiba Bonyad
{"title":"Framing the Labor of Paid Egg Donors in Iran: Marginality, Gendered Care, and Divine Reward.","authors":"Tiba Bonyad","doi":"10.1080/01459740.2024.2395291","DOIUrl":"https://doi.org/10.1080/01459740.2024.2395291","url":null,"abstract":"Despite the economic incentives evidenced in the recruitment strategies of the Iranian fertility industry for egg donors, the official discourse put forward by policymakers conveys egg donation as an altruistic act. Drawing on ethnographic fieldwork in two fertility clinics in Tehran, I center the narratives of paid egg donors to investigate how multiple meanings are attributed to egg donation as a form of labor, demonstrating how reproductive inequalities are perpetuated in this context. Following feminist theorists of reproductive bioeconomies, I argue that Iranian donors experience and articulate their participation in local egg market through the prism of their economic marginality, gendered responsibilities, and religiously informed beliefs, including divine reward.","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":"10 1","pages":"1-15"},"PeriodicalIF":2.3,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142185848","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
In/Visible - A Photographic Journey Into the Lives of Egg Donors in Spain. In/Visible - 西班牙捐卵者生活摄影之旅。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2024-09-03 DOI: 10.1080/01459740.2024.2384734
Laura Perler, Tamara Sánchez Pérez
{"title":"In/Visible - A Photographic Journey Into the Lives of Egg Donors in Spain.","authors":"Laura Perler, Tamara Sánchez Pérez","doi":"10.1080/01459740.2024.2384734","DOIUrl":"10.1080/01459740.2024.2384734","url":null,"abstract":"<p><p>The result of a collaboration between an anthropologist and a photographer, in this photo essay we aim to visualize the medical process of egg donation and the quotidian lives of egg donors in Spain. By extending their biographies beyond the moment of extraction, we shed light on the intertwined messiness of medical procedures and everyday life and the precarious circumstances in which egg donation takes place in Spain today. Our aim is to highlight the participants who, although they matter most in the egg donation economy, are concealed: the egg donors.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"1-18"},"PeriodicalIF":1.5,"publicationDate":"2024-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142126961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Controlling the Diabetic Body? Managing Chronic Illness with Wearable Technology. 控制糖尿病患者的身体？利用可穿戴技术管理慢性疾病。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2024-08-17 Epub Date: 2024-07-29 DOI: 10.1080/01459740.2024.2384749
Lisa Engström
{"title":"Controlling the Diabetic Body? Managing Chronic Illness with Wearable Technology.","authors":"Lisa Engström","doi":"10.1080/01459740.2024.2384749","DOIUrl":"10.1080/01459740.2024.2384749","url":null,"abstract":"<p><p>I explore the experience of managing type 1 diabetes with wearable technology. Type 1 diabetes is a chronic illness which requires continuous maintenance to keep the blood glucose levels within range. Using autoethnography, I investigate both the practices of translating information from technology and from senses, and also from health authorities, into practices. I conclude that the management of type 1 diabetes is informed by an urge to control the body, but this situation can be understood otherwise from a logic of care.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"522-537"},"PeriodicalIF":1.5,"publicationDate":"2024-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789416","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
"The Best I Could": Future Orientations for Danish Women with Gestational Diabetes. "尽我所能"：丹麦妊娠糖尿病妇女的未来方向。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2024-08-17 Epub Date: 2024-08-05 DOI: 10.1080/01459740.2024.2384726
Anna Brueckner Johansen, Laura Emdal Navne
{"title":"\"The Best I Could\": Future Orientations for Danish Women with Gestational Diabetes.","authors":"Anna Brueckner Johansen, Laura Emdal Navne","doi":"10.1080/01459740.2024.2384726","DOIUrl":"10.1080/01459740.2024.2384726","url":null,"abstract":"<p><p>The introduction of personalized medicine marks a shift in pregnancy-related screening, from fetal to maternal health risks putting the pregnant woman's future orientations center stage. Drawing on fieldwork from pregnancy outpatient clinics and 11 interviews with pregnant women diagnosed with gestational diabetes and offered genetic testing, we use their experiences of time to explore how futurity is reshaped by notions of early detection and at-riskness. We offer the concept of \"future prism\" to capture how multiple situations of orienting toward the future shape and circumscribe one's experience of the future - an orientation that makes genetic testing almost impossible to refuse.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"509-521"},"PeriodicalIF":1.5,"publicationDate":"2024-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890419","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Vulnerable Lives, Irrelevant Deaths? Dying Alone and Receiving Flawed Care in an Institution for the Aged in Lima, Peru. 脆弱的生命，无关紧要的死亡？在秘鲁利马的一家养老院中孤独终老并接受有缺陷的护理。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2024-08-17 Epub Date: 2024-08-15 DOI: 10.1080/01459740.2024.2388201
Magdalena Zegarra Chiappori
{"title":"Vulnerable Lives, Irrelevant Deaths? Dying Alone and Receiving Flawed Care in an Institution for the Aged in Lima, Peru.","authors":"Magdalena Zegarra Chiappori","doi":"10.1080/01459740.2024.2388201","DOIUrl":"10.1080/01459740.2024.2388201","url":null,"abstract":"<p><p>This ethnographic exploration of death in the Peruvian context draws on fieldwork among abandoned-both by their families and the state-older adults in a shelter for the homeless in Lima, Peru. I examine the conditions and local forces that shape the ways people at this institution socially and physically die. My argument is that people in this long-term care facility who have lived entire lives on the margins, usually, end up having irrelevant deaths to their families, other residents of the institution, and the Peruvian state. At this shelter, dying in an irrelevant way means dying without companionship from family members and receiving poor and flawed care from the institution that shelters them.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"482-494"},"PeriodicalIF":1.5,"publicationDate":"2024-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141984298","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Ethical and Epistemological Implications of Conducting Ethnographic Fieldwork as a Researcher-cum-Clinician in Brussels, Belgium. 在比利时布鲁塞尔以研究员兼临床医生的身份开展人种学田野调查的伦理和认识论影响。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2024-08-17 Epub Date: 2024-08-07 DOI: 10.1080/01459740.2024.2386583
Dirk Lafaut, Lisa Dikomitis
{"title":"Ethical and Epistemological Implications of Conducting Ethnographic Fieldwork as a Researcher-cum-Clinician in Brussels, Belgium.","authors":"Dirk Lafaut, Lisa Dikomitis","doi":"10.1080/01459740.2024.2386583","DOIUrl":"10.1080/01459740.2024.2386583","url":null,"abstract":"<p><p>We draw on ethnographic fieldwork conducted in Brussels (Belgium) on the health care experiences of undocumented migrants. We explore the implications of the double position of the ethnographer, who is both a researcher and a practicing doctor. We describe how the intimate knowledge the ethnographer-cum-clinician holds about the health care system influenced and shaped the data collection, analysis and subsequent policy recommendations. We examine the ethical dilemmas in conducting research from an engaged position about care practices toward vulnerable populations in one's own professional field. We conclude with recommendations on how to challenge and interrupt complexities faced by multi-positioned ethnographers.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":" ","pages":"538-552"},"PeriodicalIF":1.5,"publicationDate":"2024-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141903203","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Sitting in Wait: Everyday Caregiving Practices for People with Dementia in Rural South Africa. 坐等：南非农村地区痴呆症患者的日常护理实践》（Sitting in Wait: Everyday Caregiving Practices for People with Dementia in Rural South Africa）。
IF 1.5 3区 社会学
Medical Anthropology Pub Date : 2024-08-17 Epub Date: 2024-09-05 DOI: 10.1080/01459740.2024.2395285
Michelle R Brear, Themby Nkovana, Lenore Manderson
{"title":"Sitting in Wait: Everyday Caregiving Practices for People with Dementia in Rural South Africa.","authors":"Michelle R Brear, Themby Nkovana, Lenore Manderson","doi":"10.1080/01459740.2024.2395285","DOIUrl":"10.1080/01459740.2024.2395285","url":null,"abstract":"<p><p>Practice theories offer potential to reveal, understand, and attribute value to the everyday thoughts and actions of dementia caregivers. Drawing on ethnographic data from research in rural South Africa, on everyday dementia care practices, we highlight the profound importance of mundane practices - especially \"sitting in wait\" - for optimizing wellbeing of people with dementia who are cared for at home. We draw attention to the structural drivers of homebased (informal) care, which is underpinned by state inaction. This situates the act of sitting in wait as both an act of care and an embodied form of structural powerlessness.</p>","PeriodicalId":47460,"journal":{"name":"Medical Anthropology","volume":"43 6","pages":"469-481"},"PeriodicalIF":1.5,"publicationDate":"2024-08-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142141411","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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