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

Between personal and relational privacy: understanding the work of informed consent in cancer genetics in Brazil Jos Roberto Goldim 0 1 2 Sahra Gibbon 0 1 2 0 Anthropology Department, University College London , London , UK 1 Medical School Pontificia Universidade Catolica do Rio Grande do Sul, Universidade Federal do Rio Grande do Sul , Porto Alegre , Brazil 2 Bioethics Research Laboratory, Hospital de Clinicas de Porto Alegre, Universidade Federal do Rio Grande do Sul , Porto Alegre , Brazil 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. Bioethics; Privacy; Genetic counselling; Cancer; Informed consent - 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 fields of activity (Bosk 2002). These issues may be particularly acute in developing and low and middle income country contexts, such as in Latin American, where public health is precarious for many people in ways that often make participation in research a means of accessing basic health care resources. This is an expression of ethical variability of institutional or transnational research cultures, particularly in the context of the outsourcing of clinical trial research (Petryna 2009). The second issue relates to privacy. The most common way to understand privacy and consent is at the individual level. Developments in medical genetics extend these concepts beyond the individual, because related persons may become involved, as they are themselves at genetic risk or in a situation to benefit from familial information about potential genetic risk. In this new context, protection of personal sensitive data takes on a new (expanded) meaning of relational privacy (Ursin 2008). As a result, informed consent may only be achieved when addressed within the wider scope of the family (Hallowell 1999). This paper makes use of approaches within the disciplines of bioethics and anthropology to explore the challenges of informed consent and privacy in the context of the emerging domain of cancer genetics in Brazil. It pays particular attention to how the boundaries between personal and relational privacy are negotiated by patients and practitioners. First, 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; before outlining the particular social cultural context in which consent is sought in Brazilian public health care settings. 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. This is further explored in relation to the use of a particular tool, known as a sociogram, to examine the complex interpersonal dynamics that arise when negotiating informed consent at the interface between the family and the individual in Brazil. The historical evolution of informed consent in North America and beyond The theoretical basis for the informed consent rationale has emerged, especially in the USA, on a contractualist basis (Beauchamp and Childress 1978). In that context, the professional has a duty to inform and to respect the voluntariness of another capable person. This person, after being properly informed, chooses to accept or reject the offer made to him/her, exercising his/her autonomy. In this principialist perspective, the relationship between the professional and the other person involved is based on duties (Faden and Beauchamp 1986). Seen in this way, the consent process has certain preconditions. These include the ability to understand and decide voluntarily. The process also comprises two components: information and consent itself, as in (for example) an authorization for the proposed action (Beauchamp and Faden 1995). The professional has a duty to inform while the other person involved must decide whether to allow the proposed action. Signing of the informed consent form would be understood as the proof that the process was properly undertaken, based on the assumption that the person was able to understand and decide, after being properly informed. Many projects have been conducted to study the relationship between the capacity to provide informed consent, age and level of education. Studies have shown that it is not only adults who are capable of doing so but also teenagers and the elderly are able to decide what is in their best interest. The legal standard for capacity should not be confused with the ability in itself, which is dependent on psychological and moral development (Raymundo and Goldim 2008). Similarly, it is notable that many research participants, almost 50 %, sign a consent form without having adequate understanding of what is being proposed (Goldim et al. 2007). Nevertheless, from within the social sciences, there has been a strong critique of the principle o (...truncated)