Elusive Genes: Nuclear Test Veterans’ Experiences of Genetic Citizenship and Biomedical Refusal

Abstract

Anthropological studies of genetic citizenship have focused on illnesses with medically explained etiologies. Such studies tend to trace patients’ agency and resistance as they encounter genetic knowledge. By contrast, we explore how genetic knowledge is configured by those suffering from contested illnesses. Through interviews, we examine the claims for health care made by British and New Zealand veterans who in the 1950s took part in nuclear testing in the Pacific. We illustrate how genetic citizenship can be crafted largely without mainstream medical support or state legitimation, showing that participants understood genetics through personal, relational, and affective experiences. These experiences were utilized to build illness narratives in part because they were the best resources available. Veterans also trusted these discourses because they captured experiential knowledge and revealed personal and familial suffering in ways that biomedicine could not.

Keywords:

• contested illnesses
• genetic citizenship
• genetics
• knowledge
• nuclear radiation

ACKNOWLEDGMENTS

We would like to thank the Royal Society of New Zealand for funding Catherine Trundle's research, and the Victoria University of Wellington summer scholarship scheme, which funded Brydie Scott's involvement in this research project. We would also like to thank the three anonymous reviewers and the journal's editor who provided thoughtful, engaged, and insightful comments to earlier versions of this article.

Notes

Interviews lasted between one and three hours and were conducted in participants’ homes across New Zealand and the United Kingdom. The questions posed were semistructured and open ended, encouraging participants to reflect on their experiences of nuclear testing, their subsequent health, their explanations for the causes of illness, and their engagements with scientific and government bodies. All participants’ names in this article are pseudonyms to ensure confidentiality. Catherine Trundle also conducted participant observation in test veteran groups and gatherings, archival research in both countries, analysis of official and archival documents, court observation in the United Kingdom, and interviews with scientists, lawyers, and veterans’ advocates in New Zealand and the United Kingdom. British and New Zealand veteran participants are linked by their engagement in a transnational test veteran forum, regular correspondence, and shared involvement in litigation.

These include hereditary illnesses such as Huntington's disease or conditions linked to chance genetic aberrations such as Down Syndrome (e.g., Rapp 1995:78; Raspberry and Skinner 2007:377–379).

Additional information

Notes on contributors

Catherine Trundle

CATHERINE TRUNDLE is a lecturer in cultural anthropology at Victoria University of Wellington. She currently holds a Royal Society grant to research nuclear test veterans’ claims for health care in New Zealand and Britain.

Brydie Isobel Scott

BRYDIE ISOBEL SCOTT is a postgraduate student in cultural anthropology at Victoria University of Wellington. Her research interests include genetic technologies, risk, knowledge production, and state health care regimes.