Family medicine, ‘La Herencia’ and breast cancer; understanding the (dis)continuities of predictive genetics in Cuba

Abstract

Building on social science research examining the relationship between genetic knowledge, identity and the family this paper takes the cultural context of Cuba as a site for critical ethnographic engagement. The paper makes use of research working with a range of Cuban publics and genetic professionals as part of a collaborative research project exploring the social and cultural context of health beliefs about breast cancer. It illuminates the contrasting ways in which genomic knowledge linked to an increased risk of breast cancer is perceived, communicated, and acted upon. It is argued that the particular meaning and significance of genetic risk linked to breast cancer in this context must be examined in relation to long standing institutional practices relating to public health care provision. The focus on ‘the family’ in the provision of Cuban health provides a particularly viable foundation for the expansion of what is described as ‘community genetics’, including the collation of family history details for common complex diseases such as breast cancer. Nevertheless specific public perceptions of risk related to breast cancer and the difficulties of discussing a diagnosis of cancer openly in the family point to the very specific challenges for the translation and application of predictive interventions in Cuba. In summary the dynamic interrelationship between public health, perceptions of risk or health beliefs about the causes of the disease and attitudes towards cancer diagnosis within the family point to both continuities and discontinuities in the way that genomic interventions linked to breast cancer are unfolding as part of a dynamic yet still ostensibly socialist project of health care in Cuba.

Rural Mexican-Americans’ perceptions of family health history, genetics, and disease risk: implications for disparities-focused research dissemination

“…Literature on Latinos' awareness and understanding of family health history and its relationship to disease risk is limited, with almost no research on recent immigrants who live outside of urban centers. There is some evidence suggesting that Latinos are aware that family health history can be a risk factor for disease and are familiar with family health history information being requested during health care interactions (Gibbon 2011;Vadaparampil et al 2010). But, studies have also shown that the active collection of family health history within Latino families is rare (Centers for Disease Control 2004;Corona et al 2013).…”

“…The literature indicates that Latinos, particularly those from underserved communities, may not recognize that family health history is related to genetics (Ricker et al 2007). Additionally, multiple studies have shown that Latino community members often have limited awareness and understanding of issues related to inherited risk for disease (Gibbon 2011;Kaphingst et al 2011;Kinney et al 2010;Vadaparampil et al 2010). Latinos may also not understand risk in a genetic context because of limited genetic literacy, defined as the capacity to obtain, process, understand, and use genetic information (Eichmeyer et al, 2005;Lea et al 2011).…”

Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review

“…46,48,67,74,76,77,81,103,119,144,[151][152][153][154][155][156] Patients are hesitant to disclose their genetic results to extended family and community, and many experience social isolation after such disclosure. 76,77,81,103,134,152,155 Affected individuals and their families experience discrimination when seeking marriage prospects. 48,57,81,103,134,154 The negative portrayal of genetic diseases in the media (e.g., "children who should not have been born") is a significant factor contributing to stigma.…”

Trajetórias Terapêuticas Familiares: doenças raras hereditárias como sofrimento de longa duração

“…Testes genéticos para o câncer de mama hereditário, por exemplo, podem criar graus de ansiedade difíceis de serem resolvidos. No caso de resultados positivos que aumentam o risco para este tipo de câncer, a solução apresentada passa muitas vezes pela retirada preventiva das mamas, uma decisão complexa e nem sempre acessível para todas as mulheres 20,21 . Além disso, a disseminação desses testes poderia vir a formar uma nova classe de pessoas estigmatizadas: os doentes pré-sintomáticos, pessoas que são completamente saudáveis, mas cujos testes genéticos apontam para possibilidade de desenvolverem uma doença no futuro.…”