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Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil

Goldim, JR; Gibbon, S; (2015) Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil. Journal of Community Genetics , 6 (3) pp. 287-293. 10.1007/s12687-015-0234-4. Green open access

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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.

Type: Article
Title: Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil
Open access status: An open access version is available from UCL Discovery
DOI: 10.1007/s12687-015-0234-4
Publisher version: http://dx.doi.org/10.1007/s12687-015-0234-4
Additional information: © The Author(s) 2015. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use,distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
Keywords: Bioethics, Cancer, Genetic counselling, Informed consent, Privacy
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > UCL SLASH
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of S&HS
UCL > Provost and Vice Provost Offices > UCL SLASH > Faculty of S&HS > Dept of Anthropology
URI: https://discovery.ucl.ac.uk/id/eprint/1468768
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