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

## TL;DR

This paper examines how personal and family privacy are balanced during informed consent in cancer genetics in Brazil, using insights from anthropology and bioethics.

## Contribution

It introduces the use of sociograms to understand interpersonal dynamics in consent negotiations within Brazilian public healthcare.

## Key findings

- Informed consent in Brazil involves navigating both personal and relational privacy.
- Sociograms reveal complex family dynamics in genetic counseling.
- Cultural context shapes bioethics practices differently in Brazil compared to North America.

## 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.