{"title":"医疗保健中的设备行动主义和物质参与:追溯 1 型糖尿病自我护理开源闭环系统 #WeAreNotWaiting 运动中的参与形式。","authors":"Bianca Jansky, Henriette Langstrup","doi":"10.1057/s41292-022-00278-4","DOIUrl":null,"url":null,"abstract":"<p><p>The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their \"chronic living\" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":"1-25"},"PeriodicalIF":1.3000,"publicationDate":"2022-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024066/pdf/","citationCount":"0","resultStr":"{\"title\":\"Device activism and material participation in healthcare: retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care.\",\"authors\":\"Bianca Jansky, Henriette Langstrup\",\"doi\":\"10.1057/s41292-022-00278-4\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their \\\"chronic living\\\" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.</p>\",\"PeriodicalId\":46976,\"journal\":{\"name\":\"Biosocieties\",\"volume\":\" \",\"pages\":\"1-25\"},\"PeriodicalIF\":1.3000,\"publicationDate\":\"2022-04-22\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024066/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Biosocieties\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1057/s41292-022-00278-4\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"SOCIAL SCIENCES, BIOMEDICAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Biosocieties","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1057/s41292-022-00278-4","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"SOCIAL SCIENCES, BIOMEDICAL","Score":null,"Total":0}
Device activism and material participation in healthcare: retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care.
The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their "chronic living" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.
期刊介绍:
BioSocieties is committed to the scholarly exploration of the crucial social, ethical and policy implications of developments in the life sciences and biomedicine. These developments are increasing our ability to control our own biology; enabling us to create novel life forms; changing our ideas of ‘normality’ and ‘abnormality’; transforming our understanding of personal identity, family relations, ancestry and ‘race’; altering our social and personal expectations and responsibilities; reshaping global economic opportunities and inequalities; creating new global security challenges; and generating new social, ethical, legal and regulatory dilemmas. To address these dilemmas requires us to break out from narrow disciplinary boundaries within the social sciences and humanities, and between these disciplines and the natural sciences, and to develop new ways of thinking about the relations between biology and sociality and between the life sciences and society.
BioSocieties provides a crucial forum where the most rigorous social research and critical analysis of these issues can intersect with the work of leading scientists, social researchers, clinicians, regulators and other stakeholders. BioSocieties defines the key intellectual issues at the science-society interface, and offers pathways to the resolution of the critical local, national and global socio-political challenges that arise from scientific and biomedical advances.
As the first journal of its kind, BioSocieties publishes scholarship across the social science disciplines, and represents a lively and balanced array of perspectives on controversial issues. In its inaugural year BioSocieties demonstrated the constructive potential of interdisciplinary dialogue and debate across the social and natural sciences. We are becoming the journal of choice not only for social scientists, but also for life scientists interested in the larger social, ethical and policy implications of their work. The journal is international in scope, spanning research and developments in all corners of the globe.
BioSocieties is published quarterly, with occasional themed issues that highlight some of the critical questions and problematics of modern biotechnologies. Articles, response pieces, review essays, and self-standing editorial pieces by social and life scientists form a regular part of the journal.