Charlotte Williamson
- Published in print:
- 2010
- Published Online:
- March 2012
- ISBN:
- 9781847427458
- eISBN:
- 9781447304043
- Item type:
- chapter
- Publisher:
- Policy Press
- DOI:
- 10.1332/policypress/9781847427458.003.0010
- Subject:
- Public Health and Epidemiology, Public Health
This chapter evaluates the extent to which radical patient groups and activists have succeeded in their emancipatory task. It examines the influence of patient activism on other people concerned with ...
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This chapter evaluates the extent to which radical patient groups and activists have succeeded in their emancipatory task. It examines the influence of patient activism on other people concerned with health, including patients, health professionals, corporate rationalisers, and reformers unconnected with the patient movement. The chapter also describes the radical activists' effects on standards of care and suggests that corporate rationalisers and professionals are affected by ideas and circumstances that are independent of patient activism and patients' views and wishes.Less
This chapter evaluates the extent to which radical patient groups and activists have succeeded in their emancipatory task. It examines the influence of patient activism on other people concerned with health, including patients, health professionals, corporate rationalisers, and reformers unconnected with the patient movement. The chapter also describes the radical activists' effects on standards of care and suggests that corporate rationalisers and professionals are affected by ideas and circumstances that are independent of patient activism and patients' views and wishes.
Charlotte Williamson
- Published in print:
- 2010
- Published Online:
- March 2012
- ISBN:
- 9781847427458
- eISBN:
- 9781447304043
- Item type:
- chapter
- Publisher:
- Policy Press
- DOI:
- 10.1332/policypress/9781847427458.003.0007
- Subject:
- Public Health and Epidemiology, Public Health
This chapter discusses in detail the ten principles of patient activism named in the previous chapter. These are respect, equity, access, information, safety, choice, shared decision making, support, ...
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This chapter discusses in detail the ten principles of patient activism named in the previous chapter. These are respect, equity, access, information, safety, choice, shared decision making, support, representation, and redress. The chapter explains the concept of these principles and describes how they are used in practice. It also provides examples of recent or recurrent conflicts between patient activists and health professionals or managers.Less
This chapter discusses in detail the ten principles of patient activism named in the previous chapter. These are respect, equity, access, information, safety, choice, shared decision making, support, representation, and redress. The chapter explains the concept of these principles and describes how they are used in practice. It also provides examples of recent or recurrent conflicts between patient activists and health professionals or managers.
Charlotte Williamson
- Published in print:
- 2010
- Published Online:
- March 2012
- ISBN:
- 9781847427458
- eISBN:
- 9781447304043
- Item type:
- chapter
- Publisher:
- Policy Press
- DOI:
- 10.1332/policypress/9781847427458.003.0004
- Subject:
- Public Health and Epidemiology, Public Health
This chapter examines the founding of six radical patient groups between 1960 and 1998, and the radicalisation of two individual radical patient activists. It traces the history of the patient groups ...
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This chapter examines the founding of six radical patient groups between 1960 and 1998, and the radicalisation of two individual radical patient activists. It traces the history of the patient groups including the Association for Improvements in Maternity Services (AIMS), the National Association for the Welfare of Children in Hospital (NAWCH), and the Bristol Survey Support Group (BSSG), and describes the experiences of Jean Robinson and Mitzi Blennerhassett, two prominent figures in patient activism. The chapter discusses the conditions necessary for radicalisation and suggests that the conditions which led to the radicalisation of the patient activists described here are like those that lead to the awakening or development of oppositional consciousness in recognised emancipation movements.Less
This chapter examines the founding of six radical patient groups between 1960 and 1998, and the radicalisation of two individual radical patient activists. It traces the history of the patient groups including the Association for Improvements in Maternity Services (AIMS), the National Association for the Welfare of Children in Hospital (NAWCH), and the Bristol Survey Support Group (BSSG), and describes the experiences of Jean Robinson and Mitzi Blennerhassett, two prominent figures in patient activism. The chapter discusses the conditions necessary for radicalisation and suggests that the conditions which led to the radicalisation of the patient activists described here are like those that lead to the awakening or development of oppositional consciousness in recognised emancipation movements.
Daniel Navon
- Published in print:
- 2019
- Published Online:
- May 2020
- ISBN:
- 9780226638096
- eISBN:
- 9780226638126
- Item type:
- book
- Publisher:
- University of Chicago Press
- DOI:
- 10.7208/chicago/9780226638126.001.0001
- Subject:
- History, History of Science, Technology, and Medicine
Mobilizing Mutations shows how biomedical experts and patient advocates are using genetic testing to carve out new medical conditions and create powerful networks of research, care, and activism. For ...
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Mobilizing Mutations shows how biomedical experts and patient advocates are using genetic testing to carve out new medical conditions and create powerful networks of research, care, and activism. For sixty years, researchers have discovered, delineated, and diagnosed conditions like the XYY, NGLY1, Fragile X, and 22q11.2 Deletion Syndromes strictly according to genetic mutations, often in the face of enormous clinical variability. Mobilizing Mutations introduces this practice of “genomic designation” and takes us into the shifting social and biomedical worlds built up around these novel disorders. Combining fieldwork and historical methods, it uses a framework called “reiterated fact-making” to explain how social forces decisively shape what it means to have a genetic mutation. For decades, few outside of esoteric human genetics research really cared about these sorts of mutations. Today, new alliances of experts and advocates are building dedicated foundations, patient activist movements, specialist clinics, pharmaceutical trials, and ambitious programs of biomedical research around genomically designated conditions. The way we understand those mutations—including their very phenotypes—has been transformed. Knowing a patient has a genetic mutation can now shape their identity, prognosis, psychological evaluation, and clinical care. Meanwhile, some rare mutations are being leveraged as biological models for common conditions like autism. Increasingly, prenatal testing for these mutations creates vexed dilemmas and raises the specter of a new eugenics. Mobilizing Mutations therefore helps us rethink influential concepts like "looping," "biosociality," and "geneticization," and pushes us to grapple with the far-reaching implications of genomic designation as a way of classifying human difference.Less
Mobilizing Mutations shows how biomedical experts and patient advocates are using genetic testing to carve out new medical conditions and create powerful networks of research, care, and activism. For sixty years, researchers have discovered, delineated, and diagnosed conditions like the XYY, NGLY1, Fragile X, and 22q11.2 Deletion Syndromes strictly according to genetic mutations, often in the face of enormous clinical variability. Mobilizing Mutations introduces this practice of “genomic designation” and takes us into the shifting social and biomedical worlds built up around these novel disorders. Combining fieldwork and historical methods, it uses a framework called “reiterated fact-making” to explain how social forces decisively shape what it means to have a genetic mutation. For decades, few outside of esoteric human genetics research really cared about these sorts of mutations. Today, new alliances of experts and advocates are building dedicated foundations, patient activist movements, specialist clinics, pharmaceutical trials, and ambitious programs of biomedical research around genomically designated conditions. The way we understand those mutations—including their very phenotypes—has been transformed. Knowing a patient has a genetic mutation can now shape their identity, prognosis, psychological evaluation, and clinical care. Meanwhile, some rare mutations are being leveraged as biological models for common conditions like autism. Increasingly, prenatal testing for these mutations creates vexed dilemmas and raises the specter of a new eugenics. Mobilizing Mutations therefore helps us rethink influential concepts like "looping," "biosociality," and "geneticization," and pushes us to grapple with the far-reaching implications of genomic designation as a way of classifying human difference.
Priscilla Song
- Published in print:
- 2017
- Published Online:
- May 2018
- ISBN:
- 9780691174778
- eISBN:
- 9781400885282
- Item type:
- book
- Publisher:
- Princeton University Press
- DOI:
- 10.23943/princeton/9780691174778.001.0001
- Subject:
- Anthropology, Social and Cultural Anthropology
Thousands of people from more than eighty countries have traveled to China since 2001 to undergo fetal cell transplantation. Galvanized by the potential of stem and fetal cells to regenerate damaged ...
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Thousands of people from more than eighty countries have traveled to China since 2001 to undergo fetal cell transplantation. Galvanized by the potential of stem and fetal cells to regenerate damaged neurons and restore lost bodily functions, people grappling with paralysis and neurodegenerative disorders have ignored the warnings of doctors and scientists back home in order to stake their futures on a Chinese experiment. This book looks at why and how these individuals have entrusted their lives to Chinese neurosurgeons operating at the forefront of experimental medicine, in a world where technologies and risks move faster than laws can keep pace. The book shows how cutting-edge medicine is not just about the latest advances in biomedical science but also encompasses transformations in online patient activism, surgical intervention, and borderline experiments in health care bureaucracy. The book opens up important theoretical and methodological horizons in the anthropology of science, technology, and medicine. It illuminates how poignant journeys in search of fetal cell cures become tangled in complex webs of digital mediation, the entrepreneurial logics of postsocialist medicine, and fraught debates about the ethics of clinical experimentation. Using innovative methods to track the border-crossing quests of Chinese clinicians and their patients from around the world, the book maps the transnational life of fetal cell therapies.Less
Thousands of people from more than eighty countries have traveled to China since 2001 to undergo fetal cell transplantation. Galvanized by the potential of stem and fetal cells to regenerate damaged neurons and restore lost bodily functions, people grappling with paralysis and neurodegenerative disorders have ignored the warnings of doctors and scientists back home in order to stake their futures on a Chinese experiment. This book looks at why and how these individuals have entrusted their lives to Chinese neurosurgeons operating at the forefront of experimental medicine, in a world where technologies and risks move faster than laws can keep pace. The book shows how cutting-edge medicine is not just about the latest advances in biomedical science but also encompasses transformations in online patient activism, surgical intervention, and borderline experiments in health care bureaucracy. The book opens up important theoretical and methodological horizons in the anthropology of science, technology, and medicine. It illuminates how poignant journeys in search of fetal cell cures become tangled in complex webs of digital mediation, the entrepreneurial logics of postsocialist medicine, and fraught debates about the ethics of clinical experimentation. Using innovative methods to track the border-crossing quests of Chinese clinicians and their patients from around the world, the book maps the transnational life of fetal cell therapies.
Amy Speier
- Published in print:
- 2016
- Published Online:
- January 2017
- ISBN:
- 9781479827664
- eISBN:
- 9781479858996
- Item type:
- chapter
- Publisher:
- NYU Press
- DOI:
- 10.18574/nyu/9781479827664.003.0004
- Subject:
- Anthropology, Medical Anthropology
In this chapter we witness the local and global encounters between North American patients and Czech doctors. The chapter witnesses the shifting role of the Czech clinic within this global care ...
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In this chapter we witness the local and global encounters between North American patients and Czech doctors. The chapter witnesses the shifting role of the Czech clinic within this global care route, as they provide patient centered care. The Czech reproductive travel industry is profiting from its large supply of anonymous egg donors. I frame the entire industry as a global care route and trace global technologies, finance, images, and people enmeshed in “intimate labor” (Boris and Parreñas 2010).Less
In this chapter we witness the local and global encounters between North American patients and Czech doctors. The chapter witnesses the shifting role of the Czech clinic within this global care route, as they provide patient centered care. The Czech reproductive travel industry is profiting from its large supply of anonymous egg donors. I frame the entire industry as a global care route and trace global technologies, finance, images, and people enmeshed in “intimate labor” (Boris and Parreñas 2010).
Heather Aspell, Julie Cerrone, and Kirsten Schultz
- Published in print:
- 2018
- Published Online:
- January 2019
- ISBN:
- 9781479845194
- eISBN:
- 9781479846306
- Item type:
- chapter
- Publisher:
- NYU Press
- DOI:
- 10.18574/nyu/9781479845194.003.0011
- Subject:
- Sociology, Health, Illness, and Medicine
This chapter includes reflective essays by patient activists regarding their own work that serve as responses to key concepts in the biocitizenship literature
This chapter includes reflective essays by patient activists regarding their own work that serve as responses to key concepts in the biocitizenship literature
