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Journal of Genetic Counseling

, Volume 18, Issue 3, pp 252–264 | Cite as

Decision-Making About Inherited Cancer Risk: Exploring Dimensions of Genetic Responsibility

  • Holly EtchegaryEmail author
  • Fiona Miller
  • Sonya deLaat
  • Brenda Wilson
  • June Carroll
  • Mario Cappelli
Original Research

Abstract

Since genetic information has implications for family members, some choices about genetic risk may be influenced by perceptions of responsibility to relatives. Drawing upon 25 semi-structured interviews with test recipients in Canada, this study explored decisions about inherited breast-ovarian and colon cancer. Qualitative data analysis revealed the pervasive significance of genetic responsibility in test decisions. We highlight three dimensions of genetic responsibility: 1) to know about the self for self; 2) to know about the self for others; 3) to know about the self to oblige others to know. It is argued that these dimensions of genetic responsibility have implications for test decisions, family relationships and other family members’ desire to know (or not know) and to act (or not act) with respect to their own genetic risk. In particular, genetic responsibility may play out as a framing of a relative’s moral obligation to know their risk that could obviate any interest they might have in not knowing. We conclude that perceptions of responsibility to—and of−other family members be thoroughly explored in genetic counseling sessions.

Keywords

Inherited breast-ovarian cancer Hereditary nonpolyposis colorectal cancer Genetic responsibility Genetic testing 

Notes

Acknowledgements

We thank participants for their time and interest in this study. The project was funded by the Ontario Implementation Committee for Cancer Genetics Services (funded by the Ontario Ministry of Health and Long-term Care). The views expressed are those of the authors.

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Copyright information

© National Society of Genetic Counselors, Inc. 2009

Authors and Affiliations

  • Holly Etchegary
    • 1
    Email author
  • Fiona Miller
    • 2
  • Sonya deLaat
    • 3
  • Brenda Wilson
    • 4
  • June Carroll
    • 5
  • Mario Cappelli
    • 6
  1. 1.Interdisciplinary Research Group (IDR)IWK Health CentreHalifaxCanada
  2. 2.Department of Health Policy, Management and Evaluation, Faculty of MedicineUniversity of TorontoTorontoCanada
  3. 3.Centre for Health Economics and Policy AnalysisMcMaster UniversityHamiltonCanada
  4. 4.Department of Epidemiology and Community Medicine, Faculty of MedicineUniversity of OttawaOttawaCanada
  5. 5.Department of Family and Community Medicine, Mount Sinai HospitalUniversity of TorontoTorontoCanada
  6. 6.Children’s Hospital of Eastern Ontario, Department of PsychologyUniversity of OttawaOttawaCanada

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