Title |
Is “associativism” good for one's health? The case of rare diseases
|
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Published in |
Ciência & Saúde Coletiva, February 2018
|
DOI | 10.1590/1413-81232018232.24032017 |
Pubmed ID | |
Authors |
Rogério Lima Barbosa, Sílvia Portugal |
Abstract |
Based on the question of an inspiring work - "Is the Market good for one's Health?", this paper poses a similar question, centered on "associativism" (belonging to a labor group or association) and the field of rare diseases. Starting from the research carried out in the scope of the Master's Degree in Sociology of the School of Economics of the University of Coimbra, this text puts into perspective the formulations created for the field of genetic conditions that, mainly, depart from a Eurocentric vision. The field of rare diseases is analyzed, identifying the roles, relationships and motivations of the different actors, namely, civil associations, pharmaceutical industry, academy, government, and families. The analysis highlights the preponderance of the market and the production of medicines, identifying a governance model - Utility Model of Care - in which the person who suffers and his/her family are left devoid of their subjectivity and transmuted into medication and market agents. |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 28 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 4 | 14% |
Student > Doctoral Student | 2 | 7% |
Librarian | 2 | 7% |
Professor | 2 | 7% |
Student > Ph. D. Student | 2 | 7% |
Other | 4 | 14% |
Unknown | 12 | 43% |
Readers by discipline | Count | As % |
---|---|---|
Social Sciences | 5 | 18% |
Biochemistry, Genetics and Molecular Biology | 2 | 7% |
Nursing and Health Professions | 2 | 7% |
Computer Science | 2 | 7% |
Psychology | 1 | 4% |
Other | 3 | 11% |
Unknown | 13 | 46% |