Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil
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ORIGINAL ARTICLE
Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil José Roberto Goldim 1,2 & Sahra Gibbon 3
Received: 29 January 2015 / Accepted: 12 May 2015 / Published online: 22 May 2015 # The Author(s) 2015. This article is published with open access at Springerlink.com
Abstract 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.
This article is part of the special issue on BGenetics and Ethics in Latin America^. * José Roberto Goldim [email protected] 1
Bioethics Research Laboratory, Hospital de Clínicas de Porto Alegre, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil
2
Medical School Pontifícia Universidade Católica do Rio Grande do Sul, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil
3
Anthropology Department, University College London, London, UK
Keywords Bioethics . Privacy . Genetic counselling . Cancer . Informed consent
Introduction Two issues are particularly relevant when considering the specific bioethical challenges raised by developments in genetic medicine: informed consent and privacy. The first concerns the challenges of informed consent given the way that much medical genetics operates at a boundary, often difficult to separate, between health care and research (Hallowell 2009; Hallowell et al. 2010). In regular health care contexts, the patient brings a medical need to be evaluated and treated by professionals, while in a research scenario, the researcher offers a possibility of participation in a project. In genetic medicine, health care necessities are entangled with research possibilities and potentials. This may create problems for professionals and patients/participants with respect to issues such as consent. Patients/participants may find it difficult to understand the difference between research and health as separate fi
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