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Journal of Genetic Counseling

, Volume 7, Issue 4, pp 345–364 | Cite as

Women's Understanding of Their Risk of Developing Breast/Ovarian Cancer Before and After Genetic Counseling

  • Nina Hallowell
  • Helen Statham
  • Frances Murton
Article

Abstract

Many studies have reported that individuals frequently over- or underestimate their risk of developing cancer both before and after they attend genetic counseling for breast and/or ovarian cancer. Using a combination of interviews and written questionnaires, we investigated counselees' understanding of their risk of developing cancer before and after genetic counseling. We demonstrate that although 76% of the sample thought that their risk was elevated relative to women in general, only a small proportion (17%) were willing or able to provide a numerical estimate of their risk of developing cancer before they attended the clinic. Following the consultation, 43% indicated that their risk of developing cancer was lower than they had anticipated. Twenty-two percent described their risk in absolute rather than relative terms, i.e., that they would definitely (not) develop cancer in the future. The implications of these findings for further research are discussed.

genetic counseling risk methodology breast and ovarian cancer 

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REFERENCES

  1. Ekwo EE, Seals BF, Kim J-O, Williamson RA, Hanson JW (1985) Factors influencing maternal estimates of genetic risk. Am J Med Genet 20:491–504.PubMedGoogle Scholar
  2. Emery AEH, Raeburn JA, Skinner R, Holloway S, Lewis P (1979) Prospective study of genetic counseling. BMJ 1:1253–1256.PubMedGoogle Scholar
  3. Evans DGR, Burnell LD, Hopwood P, Howell A (1993) Perception of risk in women with a family history of breast cancer. Br J Cancer 67:612–614.PubMedGoogle Scholar
  4. Evans DGR, Blair V, Greenhalgh R, Hopwood P, Howell A (1994) The impact of genetic counseling on risk perception in women with a family history of breast cancer. B J Cancer. 70:934–938.Google Scholar
  5. Gagnon P, Massie MJ, Kash KM, Gronert M, Simkovich Heerdt A, Brown K, Sullivan MD, Borgen, P (1996) Perception of breast cancer risk and psychological distress in women attending a surveillance program. Psychol-Oncol 5:259–269.Google Scholar
  6. Hallowell N, Richards MPM (1997) Understanding life's lottery: An evaluation of studies of genetic risk awareness. J Health Psychol 2:31–43.Google Scholar
  7. Hallowell N, Statham H, Murton F, Green J, Richards MPM (1997) Talking about chance: the presentation of risk information during genetic counseling for breast and ovarian cancer. J Genet Couns 6:269–287.CrossRefGoogle Scholar
  8. Julian-Reyneir C, Eisinger F, Chabal F, Aurran Y, Nogues C, Vennin P, Bignon Y-J, Machelard-Roumagnac M, Maugard-Louboutin C, Serin D, Versini S, Mercuri M, Sobol H (1996a) Cancer genetics clinics: Target populations and consultee's expectations. Eur J Cancer 32a:398–403.CrossRefPubMedGoogle Scholar
  9. Julian-Reyneir C, Sobol H, Chabal F, Aurran Y, Nogues C, Bignon Y-J, Maugard-Louboutin C, Machelard-Roumagnac M, Vennin P, Eisinger F (1996b) Risk Perception and Anxiety Feelings After Cancer Genetic Consultation. Paper presented at the 5th European Meeting on Psychosocial Aspects of Genetics, Rome, September 26–28, 1996Google Scholar
  10. Kessler S (1990) Current psychological issues in genetic counseling. J Psychosom Obstet Gynecol 11:5–18.Google Scholar
  11. Kessler S, Levine EK (1987) Psychological aspects of genetic counseling. IV. The subjective assessment of probability. Am J Med Genet 28:361–370.PubMedGoogle Scholar
  12. Lerman C, Lustbader E, Rimer B, Daly M, Miller S, Sands C, Balshem A (1995) Effects of individualized breast cancer risk counseling: a randomized trial. J Natl Cancer Inst 87:287–292.Google Scholar
  13. Lippmann-Hand A, Fraser C (1979) Genetic counseling: Parents' responses to uncertainty. Birth Def Orig Art Ser 15:325–339.Google Scholar
  14. Lloyd S, Watson M, Waites B, Meyer L, Eeles R, Ebbs S, Tylee A (1996) Familial breast cancer: A controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counseling. Br J Cancer 74:482–487.PubMedGoogle Scholar
  15. Muhr, T, (1994) Atlas-ti. Berlin.Google Scholar
  16. Parsons E, Atkinson P (1992) Lay constructions of genetic risk. Soc Health Illness 14: 437–455.CrossRefGoogle Scholar
  17. Rosenthal R (1982) Conducting judgement studies. In: KR Scherer, P Ekman (eds) Handbook of Methods in Nonverbal Behaviour Research. Cambridge: Cambridge University Press.Google Scholar
  18. Shiloh S, Sagi M (1989) Effect of framing on the perception of genetic recurrence risks. Am J Med Genet 33:130–135.PubMedGoogle Scholar
  19. Shiloh S, Saxe L (1989) Perception of risk in genetic counseling. Psychol Health 3:45–61.Google Scholar
  20. Statham H, Green JM, Hallowell N, Murton F, Richards MPM (1996) Genetic Counseling for Breast and Ovarian Cancer: Why Do Women Attend? Poster presented at the 5th European Meeting on Psychosocial Aspects of Genetics, Rome, September 26–28, 1996.Google Scholar
  21. Strauss A, Corbin J (1990) Basics of Qualitative Research: Grounded Theory Procedures and Techniques. London: Sage.Google Scholar
  22. Wertz DC, Sorenson JR, Heeren TC (1986) Clients' interpretation of risks provided in genetic counseling. Am J Hum Genet 39:253–264.PubMedGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 1998

Authors and Affiliations

  • Nina Hallowell
  • Helen Statham
  • Frances Murton

There are no affiliations available

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