J Community Genet. 2015 May 22. [Epub ahead of print]
Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil.
Abstract
- PMID:
- 25998783
- [PubMed - as supplied by publisher]
aportes a la gestión necesaria para la sustentabilidad de la SALUD PÚBLICA como figura esencial de los servicios sociales básicos para la sociedad humana, para la familia y para la persona como individuo que participa de la vida ciudadana.
domingo, 31 de mayo de 2015
Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil. - PubMed - NCBI
Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil. - PubMed - NCBI
Drawing from perspectives of both bioethics and anthropology, this article explores how the boundaries between personal and relational privacy are negotiated by patients and practitioners in the context of an emerging domain of cancer genetics in Brazil. It reflects on the place of informed consent in the history of bioethics in North America in contrast to the development of bioethics in Brazil and the particular social cultural context in which consent is sought in Brazilian public health care. Making use of empirical research with families and individuals receiving genetic counselling related to increased genetic risk for cancer, in genetic clinics in southern Brazil, it examines how informed consent is linked to the necessary movement between personal and relational privacy. The paper illustrates the value of a particular tool known as a 'sociogram' to examine the complex interpersonal dynamics that arise in negotiating informed consent at the interface between the family and the individual in Brazil. The paper, therefore, points to the scope of further interdisciplinary exchanges between anthropology and bioethics, confronting the new challenges that arise in the context of medical genetics in developing country.
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