(In)significant genes: the work of genetic knowledge in the lives of people with NF1

Thesis

By focusing on the experiences and perspectives of those with the genetic condition NF1, the purpose of this project is to investigate Britons’ thoughts on the nature and significance of genes. Genes as units of heredity are arguably central to Euro-American biomedical cosmology. However, “gene talk” is relatively rare, both in the general public and at NTUK—the London-based charity where I conducted my ethnographic research. By centring not only on participants’ health narratives but also on their choices, biosocial involvements, and philosophical reflections, my aim is to understand the fluctuating relevance of genetic information in life beyond the clinic.

This thesis’ primary contribution is to the anthropology of knowledge. Drawing on insights from the anthropology of genetics, I push forward by analysing situations where genetic knowledge provokes existential unease. An NF1 diagnosis not only generates medical uncertainty, it also compels my participants to think of themselves in genetic terms—that is, with what Carlos Novas and Nikolas Rose (2000) have described as a “molecular optic”. In my analysis, I discuss ‘temporal discipline’ and a ‘practice of emphasis’ as tactics employed by my participants to pursue a good life. The former term concerns avoiding the temptation to anticipate the future—and future generations—based on partial genetic knowledge in the present. The latter addresses how participants ‘believe in science’ yet simultaneously entertain kinder truths in which they resist seeing themselves in purely evolutionary terms.

This thesis finds that genes are avoided in everyday discourse not because of the public’s limited scientific comprehension—nor necessarily because of continuing associations with eugenics, although this plays a role—but because there exists a cultural preference for mystery. In the opinion of several of my key participants, one ought not to think too much about genes. Thus, this thesis ultimately confirms Marilyn Strathern’s (1992: 171) prediction that Euro-Americans—at least my participants with NF1—value unpredictability and unknowability when considering their genetic origin.

Authors: Marshall, N

• DOI: 10.5287/ora-pzxrwo1ny
• Type of award: DPhil
• Level of award: Doctoral
• Awarding institution: University of Oxford
• Language: English
• Keywords: anthropology; temporality; ethics; eugenics; disability; biosociality; uncertainty; ethnography; neurofibromatosis; community; NF1; genetics; ignorance; identity; knowledge
• Subjects: Anthropology