Journal of Genetic Counseling

, Volume 15, Issue 6, pp 433–447 | Cite as

Better the Devil You Know? High-Risk Individuals’ Anticipated Psychological Responses to Genetic Testing for Melanoma Susceptibility

  • Nadine A. Kasparian
  • Bettina Meiser
  • Phyllis N. Butow
  • R. F. Soames Job
  • Graham J. Mann
Original Research

Purpose: The psychological consequences of genetic testing for mutations among individuals at increased risk of developing melanoma remain unexamined. The present study aimed to explore anticipated emotional, behavioral, cognitive, and familial responses to hypothetical genetic testing for melanoma susceptibility. Methods: Forty semi-structured interviews were undertaken with affected (n=20) and unaffected (n=20) individuals at either high or average risk of developing melanoma due to family history. Results: In-depth thematic analysis revealed that, in response to being identified as a mutation carrier, most participants with a family history anticipated calmly accepting their increased risk; either increasing precaution adoption or maintaining already vigilant behavioral practices; perceiving such information as important and valuable; and communicating genetic test results to family members, despite the acknowledgement of potential difficulties. In response to being identified as a non-carrier, the majority of participants expected to feel relieved; to maintain current precautionary health practices; to still perceive themselves at some risk of developing melanoma; and to be wary of the potential negative behavioral consequences of disclosing such information to family members. Women appeared more likely than men to acknowledge the potential for depression and worry following genetic testing. In contrast, more males than females expected to carry a gene mutation, and viewed their current preventive practices as optimum. Conclusion: Genetic testing for melanoma risk is likely to elicit a complex array of emotional, behavioral, cognitive, and familial responses for both testees and their family members, and these responses are likely to bear subtle differences for males and females.


predictive genetic testing familial melanoma anticipated psychological impact family communication gender differences 



We very gratefully acknowledge the generosity of our participants in sharing their experiences. We sincerely thank Dr. Michael Hughes, Mrs. Dianne Pilling, Mrs. Helen Schmid, Mrs. Robyn Dalziell, and Mrs. Barbara Peters for their assistance with participant recruitment. Nadine Kasparian is supported by an Australian Postgraduate Award from the University of Sydney and a Gold Star Award from the University of New South Wales. Bettina Meiser is supported by a Career Development Award from The National Health and Medical Research Council of Australia (ID 350989). Phyllis Butow is supported by a Research Fellowship from the National Health and Medical Research Council of Australia (ID 211199). Genetic epidemiology studies of the cohort have been supported by grants of the National Health and Medical Research Council of Australia (ID 107359, 211172), the state anti-cancer councils of New South Wales, Queensland and Victoria, and the US National Institutes of Health (RO1 83115-01A2).


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Copyright information

© National Society of Genetic Counselors, Inc. 2006

Authors and Affiliations

  • Nadine A. Kasparian
    • 1
    • 2
    • 5
  • Bettina Meiser
    • 2
    • 3
  • Phyllis N. Butow
    • 1
  • R. F. Soames Job
    • 1
  • Graham J. Mann
    • 4
  1. 1.Medical Psychology Research Unit, School of PsychologyUniversity of SydneySydneyAustralia
  2. 2.Psychosocial Research Group, Department of Medical OncologyPrince of Wales HospitalSydneyAustralia
  3. 3.School of PsychiatryUniversity of NSWSydneyAustralia
  4. 4.Westmead Institute of Cancer ResearchUniversity of Sydney at Westmead Millennium Institute, WestmeadSydneyAustralia
  5. 5.Psychosocial Research Group, Level 3 Dickinson BuildingPrince of Wales HospitalRandwickAustralia

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