Faculty Seminar on Narrative Genetics

Organization

• Marsha Hurst, Organizer

Overview

Narrative genetics is the exploration of how genetic understanding and belief are expressed through story, and of the impact on our person, our society and our culture of those narratives. With the mapping of the human genome, much of medical knowledge and resultant healthcare have been "geneticized" and the stories we tell of our own diseases experience and of disease in our society are increasingly genetic narratives.

These narratives about genetic causality elucidate our culture, express our understanding of what is human, and reflect the social values and power relationships of our society. Narratives of race and genetics, for example, are deeply imbedded in American history and culture; and the reracialization of medical research, of medical entrepreneurship, and of narratives that frame individual risk compels us to examine genetic narratives in terms of these overarching cultural co-constructions of race and genetics.

Narratives that dominate public discourse may be different than and inconsistent with private narratives. Narratives imbued with the ideology of individual choice dominate practice and private behavior in prenatal diagnosis; yet narrative of individual choice - of autonomy and self-determination—are avoided and superseded by narratives of public good in mandated newborn screening. And both of these narratives are in conflict with political reality that limits reproductive choice and public support for families with differently-abled children.

Similarly, individual narratives of genetic causality will tell us very different stories about what people really believe is inherited from what evidence-based science or medicine concludes. Pregnant women's narratives of heritability, for example, may be deeply familial and cultural, focusing on attitude, behavior, temperament, values and beliefs. In addition, they understand genetics to be highly influenced by not only family and culture, but by the internal and external environments of their pregnancy. Personal narratives of disease, as another example, are commonly narratives in which causality is a complicated blend of predisposing genetics, personal behavior and environmental impact. Advocacy narratives in particular commonly privilege known familial or community experience over scientifically constructed knowledge: in a community with high rates of childhood cancer, for example, complex genetic narratives of illness tell stories of common exposure and predisposing conditions. Women with breast cancer in their family or community will explain their disease as a genetic narrative, albeit not necessarily one narrowly confined to BRCA1 or BRCA2.

Narrative genetics as a new arena of narrative knowledge explores these expressions of narrative understanding and the cultural narratives that frame those expressions. The study of narrative genetics uses contemporary media, literature, film, and all genres of patient stories to explore narrative genetic knowledge and understand the importance and impact of genetic narratives in society.