Detalhes bibliográficos
| Ano de defesa: |
2015 |
| Autor(a) principal: |
Pereira, Camila Claudiano Quina
 |
| Orientador(a): |
Spink, Mary Jane Paris |
| Banca de defesa: |
Não Informado pela instituição |
| Tipo de documento: |
Tese
|
| Tipo de acesso: |
Acesso aberto |
| Idioma: |
por |
| Instituição de defesa: |
Pontifícia Universidade Católica de São Paulo
|
| Programa de Pós-Graduação: |
Programa de Pós-Graduação em Psicologia: Psicologia Social
|
| Departamento: |
Psicologia
|
| País: |
BR
|
| Palavras-chave em Português: |
|
| Palavras-chave em Inglês: |
|
| Área do conhecimento CNPq: |
|
| Link de acesso: |
https://tede2.pucsp.br/handle/handle/17094
|
Resumo: |
The aim of this research was to understand how lay people, collectively organized, take part in the construction of knowledge about health problems affecting them. We have chosen a case study: how associations for people with rare diseases take part in the construction of the National Policy of Comprehensive Care for People with Rare Diseases in the Unified Health System (SUS). We started from the assumption that biological dimension enables new identities and expressions of citizenship, which have been reviewed with the advancement of biotechnology, like expressed in the human genome research. New socialities, based on political action and driven by hope in new treatments and medicines, have also been produced. Our hypothesis is: these collectives will organize forums when grey areas of knowledge appear or when new research horizons cease to exist. To achieve our purpose, our methodological strategy was to use multiple sources of information, such as analysis of public domain documents, interviews, participation in events and conversations with patients association s representatives. The study showed how new identities emerged by an organic design (biossocialities) and how they were rewritten in citizenship projects (biocitizenship) which claim for public policies that meet patients desires, including diagnosis, treatment and access to medicines |
