Skip to main content
SpringerLink
Log in

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

  • Original Research
  • Published:
Journal of Genetic Counseling

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1.

Similar content being viewed by others

REFERENCES

  • Abbey, A., Andrews, F., & Halman, L. (1991). Gender’s role in responses to infertility. Psychol Women Quart, 15, 295–316.

    Article  Google Scholar 

  • Aktan-Collan, K., Haukkala, A., Mecklin, J., Uutela, A., & Kaariainen, H. (2001). Psychological consequences of predictive testing for hereditary non-polyposis colorectal cancer (HNPCC): A prospective follow-up study. Int J Cancer, 93, 608–611.

    Article  PubMed  CAS  Google Scholar 

  • Armitage, C., & Conner, M. (2001). Efficacy of the theory of planned behaviour: A meta-analytic review. Br J Soc Psychol, 40(4), 471–499.

    Article  PubMed  CAS  Google Scholar 

  • Armstrong, B. K., & Kricker, A. (2001). The epidemiology of UV induced skin cancer. J Photochem Photobiol B, 63(1–3), 8–18.

    Article  PubMed  CAS  Google Scholar 

  • Arthey, S., & Clarke, V. (1995). Sun tanning and sun protection:A review of the psychological literature. Soc Sci Med, 40(2), 265–274.

    Article  PubMed  CAS  Google Scholar 

  • Autier, P., & Dore, J. F. (1998). Influence of sun exposures during childhood and during adulthood on melanoma risk. Int J Cance,r 77(4), 533–537.

    Article  PubMed  CAS  Google Scholar 

  • Bishop, D., Demenais, F., Goldstein, A., Bergman, W., Newton-Bishop, J., Bressac-dePaillerets, B., et al. (2002). Geographical variation in the penetrance of CDKN2A mutations for melanoma. J Nat Cancer Inst, 94, 894–903.

    PubMed  CAS  Google Scholar 

  • Botkin, J., Smith, K., Croyle, R., Baty, B., Wylie, J., Dutson, D., et al. (2003). Genetic testing for a BRCA1 mutation: Prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet, 118A, 201–209.

    Article  PubMed  Google Scholar 

  • Brodersen, N. H., Sutton, S., Goff, S., Hodgson, S. V., & Thomas, H. J. (2004). Anticipated reactions to genetic testing for hereditary non-polyposis colorectal cancer susceptibility. Clin Genet, 66(5), 437–444.

    Article  PubMed  CAS  Google Scholar 

  • Byng-Hall, J. (1988). Scripts and legends in families and family therapy. Fam Proc, 27, 167–179.

    Article  CAS  Google Scholar 

  • Cannon-Albright, L., Meyer, L., Goldgar, D., Lewis, C., McWhorter, W., Jost, M., et al. (1994). Penetrance and expressivity of the chromosome 9p melanoma susceptibility locus (MLM). Cancer Res, 54, 6041–6044.

    PubMed  CAS  Google Scholar 

  • Claes, E., Denayer, L., Evers-Kiebooms, G., Boogaerts, A., & Legius, E. (2004). Predictive testing for hereditary non-polyposis colorectal cancer: Motivation, illness representation, and short-term psychological impact. Pat Educ Counsel, 55, 265–274.

    Article  Google Scholar 

  • Clarke, V., Williams, T., & Arthey, S. (1997). Skin type and optimistic bias in relation to the sun protection and suntanning behaviors of young adults. J Behav Med, 20(2), 207–222.

    Article  PubMed  CAS  Google Scholar 

  • Collins, V., Meiser, B., Gaff, C., St John, D., & Halliday, J. (2005). Screening and preventive behaviors one year after predictive genetic testing for hereditary non-polyposis colorectal carcinoma. Cancer, 104(2), 273–281.

    Article  PubMed  Google Scholar 

  • Conner, M., & Sparks, P. (1996). The theory of planned behaviour and health behaviours. In M. Conner & P. Norman (Eds.), Predicting health behaviour: research and practice with social cognition models (pp. 121–162). Ballmore, Buckingham: Open University Press.

  • Croyle, R., Smith, K., Botkin, J., Baty, B., & Nash, J. (1997). Psychological responses to BRCA1 mutation testing: Preliminary findings. Health Psychol, 16(1), 63–72.

    Article  PubMed  CAS  Google Scholar 

  • Decruyenaere, M., Evers-Kiebooms, G., Welkenhuysen, M., Denayer, L., & Claes, E. (2000). Cognitive representations of breast cancer, emotional distress and preventive health behaviour: A theoretical perspective. Psycho-Oncol, 9, 528–536.

    Article  CAS  Google Scholar 

  • N. Denzin, & Y. Lincoln (Eds.) (1994). Handbook of qualitative research, Dallas, TX: Sage Publications.

  • Dorval, M., Patenaude, A., Schneider, K., Kieffer, S., DiGianni, L., Kalkbrenner, K., et al. (2000). Anticipated versus actual emotional reactions to disclosure of results of genetic tests for cancer susceptibility: Findings from p53 and BRCA1 testing programs. J Clin Oncol, 18(10), 2135–2142.

    PubMed  CAS  Google Scholar 

  • Egan, G. (2002). The skilled helper: A problem-management and opportunity-development approach to helping, 7th edn. Pacific Grove, CA: Brooks/Cole Publishing Company.

    Google Scholar 

  • Foster, C., Eeles, R., Ardern-Jones, A., Moynihan, C., & Watson, M. (2004). Juggling roles and expectations: Dilemmas faced by women talking to relatives about cancer and genetic testing. Psychol Health, 19(4), 439–455.

    Article  Google Scholar 

  • Gaff, C., Collins, V., Symes, T., & Halliday, J. (2005). Facilitating family communication about predictive genetic testing: Probands’ perceptions. J Genet Couns, 14(2), 133–140.

    Article  PubMed  Google Scholar 

  • Goldstein, A., Falk, R., Fraser, M., Dracopoli, N., Sikorski, R., Clark, W. J., et al. (1998). Sun-related risk factors in melanoma-prone families with CDKN2A mutations. J Nat Cancer Inst, 90(9), 709–711.

    Article  PubMed  CAS  Google Scholar 

  • Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: Patterns, priorities and problems. Clin Genet, 67(6), 492–502.

    Article  PubMed  CAS  Google Scholar 

  • Hayward, N. (2003). Genetics of melanoma predisposition. Oncogene, 22, 3053–3062.

    Article  PubMed  CAS  Google Scholar 

  • Hill, D., Rassaby, J., & Gardner, G. (1984). Determinants of intentions to take precautions against skin cancer. Comm Health Stud, 8, 33–44.

    CAS  Google Scholar 

  • Holland, E., Schmid, H., Kefford, R., & Mann, G. (1999). CDKN2A (p16INK4a) and CDK4 mutation analysis in 131 Australian melanoma probands: Effect of family history and multiple primary melanomas. Genes Chromosom Cancer, 25, 339–348.

    Article  PubMed  CAS  Google Scholar 

  • Jarvinen, H., Aarnio, M., Mustonen, H., Aktan-Collan, K., Aaltonen, L., Peltomaki, P., et al. (2000). Controlled 15-year trial on screening for colorectal cancer in families with hereditary non-polyposis colorectal cancer. Gastroenterol, 118(5), 829–834.

    Article  CAS  Google Scholar 

  • Keesling, B., & Friedman, H. (1987). Psychosocial factors in sunbathing and sunscreen use. Health Psychol, 6, 477–493.

    Article  PubMed  CAS  Google Scholar 

  • Kefford, R., & Mann, G. (2003). Is there a role for genetic testing in patients with melanoma? Curr Opin Oncol, 15, 157–161.

    Article  PubMed  Google Scholar 

  • Kefford, R., Newton-Bishop, J., Bergman, W., & Tucker, M. (1999). Counseling and DNA testing for individuals perceived to be genetically predisposed to melanoma: A consensus statement of the melanoma genetics consortium. J Clin Oncol, 17(10), 3245–3251.

    PubMed  CAS  Google Scholar 

  • Keller, M., & Henrich, G. (1999). Illness-related distress: Does it mean the same for men and women? Gender aspects in cancer patients’ distress and adjustment. Acta Oncologica, 38, 747–755.

    Article  PubMed  CAS  Google Scholar 

  • Kenen, R., Ardern-Jones, A., & Eeles, R. (2004). We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer. Psycho-Oncol, 13, 335–345.

    Article  Google Scholar 

  • Koh, H., Bak, S., Geller, A., Mangione, T., Hingson, R., Levenson, S., et al. (1997). Sunbathing habits and sunscreen use among white adults: Results of a national survey. Am J Pub Health, 87(7), 1214–1217.

    Article  PubMed  CAS  Google Scholar 

  • Lerman, C., Daly, M., Masny, A., & Balshem, A. (1994). Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol, 12(4), 843–850.

    PubMed  CAS  Google Scholar 

  • Lerman, C., Hughes, C., Croyle, R., Main, D., Durham, C., Snyder, C., et al. (2000). Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Prev Med, 31(1), 75–80.

    Article  PubMed  CAS  Google Scholar 

  • Lerman, C., Marshall, J., Audrain, J., & Gomez-Caminero, A. (1996a). Genetic testing for colon cancer susceptibility: Anticipated reactions of patients and challenges to providers. Int J Cancer, 69, 58–61.

    Article  PubMed  CAS  Google Scholar 

  • Lerman, C., Narod, S., Schulman, K., Hughes, C., Gomez-Caminero, A., Bonney, G., et al. (1996b). BRCA1 testing in families with hereditary breast-ovarian cancer: A prospective study of patient decision making and outcomes. JAMA, 275(24), 1885–1892.

    Article  PubMed  CAS  Google Scholar 

  • Lerman, C., Seay, J., Balshem, A., & Audrain, J. (1995). Interest in genetic testing among first-degree relatives of breast cancer patients. Am J Med Genet, 57, 385–392.

    Article  PubMed  CAS  Google Scholar 

  • Leventhal, H., & Cameron, L. (1987). Behavioural theories and the problem of compliance. Pat Educ Counsel, 10, 117– 138.

    Article  Google Scholar 

  • Leventhal, H., Diefenbach, M., & Leventhal, E. (1992). Illness cognitions: Using common sense to understand treatment adherence and affect cognition interactions. Cognit Ther Res, 16, 143–163.

    Article  Google Scholar 

  • Loader, S., Shields, C., & Rowley, P. (2004). Impact of genetic testing for breast-ovarian cancer susceptibility. Genet Test, 8(1), 1–12.

    Article  PubMed  Google Scholar 

  • Lodder, L., Frets, P., Trijsburg, R., Meijers-Heijboer, E., Klijn, J., Duivenvoorden, H., et al. (2001). Psychological impact of receiving a BRCA1/BRCA2 test result. Am J Med Genet, 98(1), 15–24.

    Article  PubMed  CAS  Google Scholar 

  • Lodder, L., Frets, P., Trijsburg, R., Meijers-Heijboer, E., Klijn, J., & Niermeijer, M. (2000). Attitudes towards termination of pregnancy in subjects who underwent presymptomatic testing for the BRCA1/BRCA2 gene mutation in The Netherlands. J Med Genet, 37(11), 883–884.

    Article  PubMed  CAS  Google Scholar 

  • Mahlstedt, P. (1985). The psychological component of infertility. Fertil Steril, 43, 335–346.

    PubMed  CAS  Google Scholar 

  • McCann, S., Stewin, L., & Short, R. (1991). Sex differences, social desirability, masculinity, and tendency to worry. J Genet Psychol, 152, 295–301.

    Article  PubMed  CAS  Google Scholar 

  • McDonough, P., & Walters, V. (2001). Gender and health: Reassessing patterns and explanations. Soc Sci Med, 52, 547–559.

    Article  PubMed  CAS  Google Scholar 

  • Meiser, B., Butow, P., Friedlander, M., Barratt, A., Schnieden, V., Watson, M., et al. (2002). Psychological impact of genetic testing in women from high-risk breast cancer families. Eur J Cancer, 38, 2025–2031.

    PubMed  CAS  Google Scholar 

  • Meiser, B., Collins, V., Warren, R., Gaff, C., St John, D., Young, M., et al. (2004). Psychological impact of genetic testing for hereditary non-polyposis colorectal cancer. Clin Genet, 66, 502–511.

    Article  PubMed  CAS  Google Scholar 

  • Michie, S., McDonald, V., & Marteau, T. (1996). Understanding responses to predictive genetic testing: A grounded theory approach. Psychol Health, 11(4), 455–470.

    Google Scholar 

  • Miles, M., & Huberman, A. (1994). Qualitative data analysis: An expanded sourcebook. Sage.

  • Miller, S. M., & Kirsch, N. (1987). Sex differences in cognitive coping with stress. In R. Barnett, L. Biener, & G. Baruch (Eds.), Gender and Stress. pp. 278–307. New York: Free Press,

    Google Scholar 

  • Palmer, J., Duffy, D., Box, N., Aitken, J., O’Gorman, L., Green, A., et al. (2000). Melanocortin-1 receptor polymorphisms and risk of melanoma: Is the association explained solely by pigmentation phenotype? Am J Human Genet, 66(1), 176–186.

    Article  CAS  Google Scholar 

  • Patton, M. (1990). Qualitative evaluation and research method, 2nd edn. Dallas, TX: Sage Publications.

    Google Scholar 

  • Ptacek, J., Smith, R., & Dodge, K. (1994). Gender differences in coping with stress: When stressor and appraisals do not differ. Pers Soc Psychol Bull, 20(4), 421–430.

    Google Scholar 

  • Reichelt, J., Heimdal, K., Moller, P., & Dahl, A. (2004). BRCA1 testing with definitive results: A prospective study of psychological distress in a large clinic-based sample. Familial Cancer, 3, 21–28.

    Article  PubMed  Google Scholar 

  • Riedijk, S., de Snoo, F., van Dijk, S., Bergman, W., van Haeringen, A., Silberg, S., et al. (2005). Hereditary melanoma and predictive genetic testing: Why not? Psycho-Oncol, 14, 738–745.

    Article  CAS  Google Scholar 

  • Robinson, J., Rademaker, A., Sylvester, J., & Cook, B. (1997a). Knowledge, attitudes, and behaviors of midwest adolescents. Prev Med, 26, 364–372.

    Article  PubMed  CAS  Google Scholar 

  • Robinson, J., Rigel, D., & Amonette, R. (1997b). Trends in sun exposure knowledge, attitudes, and behaviors: 1986 to 1996. J Am Acad Dermatol, 37, 179–186.

    Article  PubMed  CAS  Google Scholar 

  • Scheuer, L., Kauff, N., Robson, M., Kelly, B., Barakat, R., Satagopan, J., et al. (2002). Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers. J Clin Oncol, 20(5), 1260–1268.

    Article  PubMed  Google Scholar 

  • Schwartz, M., Peshkin, B., Hughes, C., Main, D., Isaacs, C., & Lerman, C. (2002). Impact of BRCA1/BRCA2 mutation testing on psychological distress in a clinic-based sample. J Clin Oncol, 20(2), 514–520.

    Article  PubMed  Google Scholar 

  • Sheeran, P. (2002). Intention-behavior relations: A conceptual and empirical review. Eur Rev Soc Psychol, 12, 1–36.

    Google Scholar 

  • Smith, K., Ellington, L., Chan, A., Croyle, R., & Botkin, J. (2004). Fertility intentions following testing for a BRCA1 gene mutation. Cancer Epidemiol Biomark Prev, 13(5), 733–740.

    Google Scholar 

  • Spence, J., Deaux, K., & Helmreich, R. (1985). Sex roles in contemporary American society. In G. Lindzey & E. Aronson (Eds.), Handbook of social psychology (pp. 149–178). New York: Random House.

  • Stone, A., & Neale, J. (1984). New measure of daily coping: Development and preliminary results. J Pers Soc Psychol, 46, 892–906.

    Article  Google Scholar 

  • Struewing, J., Lerman, C., Kase, R., Giambarresi, T., & Tucker, M. (1995). Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families. Cancer Epidemiol Biomark Prev, 4, 169– 173.

    CAS  Google Scholar 

  • Sutton, S. (1998). Predicting and explaining intentions and behavior: How well are we doing? J Appl Soc Psychol, 28(15), 1317–1338.

    Article  Google Scholar 

  • Tucker, M., Fraser, M., Goldstein, A., Elder, D., Guerry, D. t., & Organic, S. (1993). The risk of melanoma and other cancers in melanoma-prone families. J Invest Dermatol, 100(3), 350S–355S.

    Article  PubMed  CAS  Google Scholar 

  • van der Velden, P., Sandkuijl, L., Bergman, W., Pavel, S., van Mourik, L., Frants, R., et al. (2001). Melanocortin-1 receptor variant R151C modifies melanoma risk in Dutch families with melanoma. Am J Human Genet, 69(4), 774– 779.

    Article  CAS  Google Scholar 

  • van Ryn, M., Lytle, L., & Kirscht, J. (1996). A test of the theory of planned behaviour for two health-related practices. J Appl Soc Psychol, 26(10), 871–883.

    Article  Google Scholar 

Download references

ACKNOWLEDGMENTS

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).

Author information

Authors and Affiliations

  1. Medical Psychology Research Unit, School of Psychology, University of Sydney, Sydney, Australia

    Nadine A. Kasparian, Phyllis N. Butow & R. F. Soames Job

  2. Psychosocial Research Group, Department of Medical Oncology, Prince of Wales Hospital, Sydney, Australia

    Nadine A. Kasparian & Bettina Meiser

  3. School of Psychiatry, University of NSW, Sydney, Australia

    Bettina Meiser

  4. Westmead Institute of Cancer Research, University of Sydney at Westmead Millennium Institute, Westmead, Sydney, Australia

    Graham J. Mann

  5. Psychosocial Research Group, Level 3 Dickinson Building, Prince of Wales Hospital, Randwick, NSW, 2031, Australia

    Nadine A. Kasparian

Authors
  1. Nadine A. Kasparian
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Bettina Meiser
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Phyllis N. Butow
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. R. F. Soames Job
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Graham J. Mann
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Nadine A. Kasparian.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Kasparian, N.A., Meiser, B., Butow, P.N. et al. Better the Devil You Know? High-Risk Individuals’ Anticipated Psychological Responses to Genetic Testing for Melanoma Susceptibility. J Genet Counsel 15, 433–447 (2006). https://doi.org/10.1007/s10897-006-9038-3

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10897-006-9038-3

KEY WORDS:

Search

Navigation