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

José Roberto Goldim,Sahra Gibbon

doi:10.1007/s12687-015-0234-4

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.

Highlights

Two issues are 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)
Making use of empirical research with families and individuals receiving genetic counselling related to genetic risk for cancer in genetic clinics in southern Brazil, it illustrates how informed consent is linked to the necessary movement between personal and relational privacy
We describe one case study in detail, using the sociogram tool, to show how the shift from personal to relational privacy in cancer genetics is complexly configured by gendered ideas of responsibility and affective moral relations

Summary

Introduction

Two issues are relevant when considering the specific bioethical challenges raised by developments in genetic medicine: informed consent and privacy. Who is the ‘patient’, in the context of medical genetics, is often a complex issue This raises ethical questions about the responsibility of the patient to related others and kin and to medical professionals balancing the need to share information about possible genetic risk to other members of the family with the need to protect privacy and maintain confidentiality of individual patients. I want to know the possibilities for my daughter and for my nieces For another patient, from Porto Alegre, this was not so much a choice, as an obligation reflected in the way she articulated her decision to participate in genetic research related to cancer risk in the family:. Relational privacy is, not the loss of personal privacy but a selective sharing with people who have some connection with the bearer of that information, according to the (understood) meaning of genetic risk within the family

Conclusion

Compliance with ethical standards