‘They had the right to know.’ Genetic risk and perceptions of responsibility

Abstract

The idea that people should be responsible for their health is not new. The construction of health as a moral issue has often been applied to voluntary health risks. With the advent of predictive genetic testing, however, people may also bear responsibility for their genetic risks. Drawing upon 24 semi-structured interviews with at risk persons and their family members, this study explored perceptions of responsibility associated with genetic risk for the adult-onset disorder, Huntington disease (HD). Qualitative data analysis suggested that decisions around genetic risk were often influenced by obligations to other family members. Some participants felt responsible to determine their genetic risks through testing, particularly for at risk offsprings. Responsibility to current and future partners, to plan for a future that might include HD and to communicate genetic risk to other family members also emerged as important dimensions of genetic responsibility. It is argued that perceptions of responsibility in this context may constrain some of the choices of those who live with genetic risk having implications for test decisions, post-test adjustment and family relationships.

Keywords:

• Huntington disease
• genetic testing
• genetic responsibility
• moral obligation
• genetic decision-making

Acknowledgements

We are grateful to participants for their patience and trust. Without their generosity, such research would simply not be possible. We also thank representatives from the medical genetics clinic and the local branch of the Huntington Society of Canada for their help with recruitment. The research presented in this article was generously supported by a doctoral fellowship to the first author from the Newfoundland and Labrador Centre for Applied Health Research and the Department of Psychology, Memorial University, both in St John's, NL. During the writing of this article, the first author was supported by a Postdoctoral Fellowship from the GeneSens research group, Department of Epidemiology and Community Medicine and the Gap-Santé research group, National Institute of Population Health, University of Ottawa, Ottawa, ON.

Notes

Notes

[1] We thank an anonymous reviewer for this suggestion.

[2] Lori has since received a negative test result.