Journal of Genetic Counseling

, Volume 7, Issue 3, pp 279–297 | Cite as

Cancer Risk Assessment and Genetic Counseling in an Academic Medical Center: Consultands' Satisfaction, Knowledge, and Behavior in the First Year

  • Mona Penles Stadler
  • John J. Mulvihill


In 1995, we formally established a multifaceted cancer genetics program of clinical services, research, and education at a general academic medical center. In the first year, 58 families, mostly physician referred, received cancer risk assessment and genetic counseling for a family and/or medical history of cancer. The primary reasons for seeking consultation were to determine their risk or their offspring's risk for developing certain cancers and to inquire about the availability of DNA testing for predisposition to breast, ovarian, or colon cancers. To assess the level of satisfaction with program services, 51 consultands (22% with a personal history of cancer) were interviewed independently by telephone 3–12 months after the session. One goal of the survey was to improve program service. Ninety percent of respondents reported that the consultation was worth their time and money. Forty-two percent stated that their anxiety related to their cancer risk had decreased following counseling and 56% indicated no change. Recall of exact numerical risk was poor and one-third could not remember hearing any risk estimate. More respondents would recommend the service to friends (90%) than to family members (75%). Overall, the service was positively received by the majority of patients.

genetic counseling hereditary cancer attitudes 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. American Society of Human Genetics (1994) On genetic testing for breast and ovarian cancer predisposition. Am J Hum Genet 55:i-iv.Google Scholar
  2. American Society of Clinical Oncology Statement (1996) Genetic testing for cancer susceptibility. J Clin Oncol 14:1730-1736.Google Scholar
  3. Benichou J, Gail MH, Mulvihill JJ (1996) Graphs to estimate an individualized risk of breast cancer. J Clin Oncol 14:103-110.PubMedGoogle Scholar
  4. Biesecker BB, Boehnke M, Calzone K, Marker DS, Garber JE, Collins FS, Weber BL (1993) Genetic counseling for families with inherited susceptibility to breast and ovarian cancer. JAMA 269:1970-1974.PubMedGoogle Scholar
  5. Billings PR, Kohn MA, de Cuevas M, Beckwith J, Apler JS, Natowicz MR (1992) Discrimination as a consequence of genetic testing. Am J Hum Genet 50:476-482.PubMedGoogle Scholar
  6. Black WC, Nease RF, Tosteson ANA (1995) Perceptions of breast cancer risk and screening effectiveness in women younger than 50 years of age. JNCI 87:720-731.PubMedGoogle Scholar
  7. Bronner CE, Baker SM, Morrison PT, Warren G, Smith LG, Lescoe MK, Kane M, Earabino C, Lipford J, Lindblom A, Tannergard P, Bollag RJ, Godwin AR, Ward DC, Nordenskjold M, Fishel R, Kolodner R, Liskay RM (1994) Mutation in the DNA mismatch repair gene homolog hMLH1 is associated with hereditary nonpolyposis colon cancer. Nature 368:258-261.PubMedGoogle Scholar
  8. Burke W, Petersen G, Lynch P, Botkin J, Daly M, Garber J, Kahn MJE, McTiernan A, Offit K, Thompson E, Varricchio C (1997) Recommendations for follow-up care of individuals with an inherited predisposition to cancer: Hereditary nonpolyposis colon cancer. JAMA 277:915-919.PubMedGoogle Scholar
  9. Burke W, Daly M, Garber J, Botkin J, Kahn MJE, Lynch P, McTiernan A, Offit K, Perlman J, Petersen G, Thomson E, Varricchio C (1997) Recommendations for follow-up care of individuals with an inherited predisposition to cancer: BRCA1 and BRCA2. JAMA 277:997-1003.PubMedGoogle Scholar
  10. Claus EB, Risch N, Thompson WD (1994) Autosomal dominant inheritance of early-onset breast cancer: Implications for risk prediction. Cancer 73:643-651.PubMedGoogle Scholar
  11. Ekwo E, Seals B, Kim JO, Williamson RA, Hanson JW (1985) Factors influencing maternal estimates of genetic risk. Am J Med Genet 20:491-504.PubMedGoogle Scholar
  12. Evans DGR, Burnell LD, Hopwood P, Howell A (1993) Perceptions of risk in women with a family history of breast cancer. Br J Cancer 67:612-614.PubMedGoogle Scholar
  13. Evans DGR, Cuzick J, Howell A (1996) Cancer genetics clinics. Eur J Cancer 32A:391-392.PubMedGoogle Scholar
  14. Fishel R, Lescoe MK, Rao MRS, Copeland NG, Jenkins NA, Garber J, Kane M, Kolodner R (1993) The human mutator gene homolog MSH2 and its association with hereditary nonpolyposis colon cancer. Cell 75:1027-1038.PubMedGoogle Scholar
  15. Gail M, Brinton LA, Byar DP, Corle DK, Green SB, Schairer C, Mulvihill JJ (1989) Projecting individualized probabilities of developing breast cancer for white females who are being examined annually. JNCI 81:1879-1886.PubMedGoogle Scholar
  16. Hoskins IA (1989) Genetic counseling for cancer patients. Oncology 3:84-98.PubMedGoogle Scholar
  17. Hoskins KF, Stopfer JE, Calzone KA, Merajver SD, Rebbeck TR, Garber JE, Weber BL (1995) Assessment and counseling for women with a family history of breast cancer: A guide for clinicians. JAMA 273:577-585.PubMedGoogle Scholar
  18. Julian-Reynier 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 (1996) Cancer genetics clinics: Target population and consultees expectations. Eur J Cancer 32A:398-403.CrossRefPubMedGoogle Scholar
  19. Kash KM, Holland JC, Halper MS, Miller DG (1992) Psychological distress and surveillance behavior of women with a family history of breast cancer. JNCI 84:24-30.PubMedGoogle Scholar
  20. Leach FS, Nicolaides NC, Papadopoulos N, Liu B, Jen J, Parsons R, Peltomaki P, Sistonen P, Aaltonen LA, Nystrom-Lahti M, Guan X-Y, Zhang Ji, Meltzer PS, Yu J-W, Kao F-T, Chen DJ, Cerosaletti KM, Fournier RE, Todd S, Lewis T, Leach RJ, Naylor SL, Weissenbach J, Mecklin J-P, Jarvinen H, Peterson GM, Hamilton SR, Green J, Jass J, Watson P, Lynch HT, Trent JM, de la Chapelle A, Kinzler KW, Vogelstein B (1993) Mutations of a mutS homolog in hereditary nonpolyposis colorectal cancer. Cell 75:1215-1225.PubMedGoogle Scholar
  21. Lerman C, Daly M, Masny A, Balshem A (1994) Attitudes about genetic testing for breast-ovarian cancer susceptibility. J Clin Oncol 12:843-850.PubMedGoogle Scholar
  22. 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. JNCI 87:286-292.PubMedGoogle Scholar
  23. Lerman C, Croyle RT (1996) Emotional and behavioral responses to genetic testing for susceptibility to cancer. Oncology 10:191-199.PubMedGoogle Scholar
  24. Lynch HT, Lynch JF (1991) Familial factors and genetic predisposition to cancer: Population studies. Cancer Detect Prevent 15:49-57.PubMedGoogle Scholar
  25. Lynch HT, Lynch JF (1996) Genetic counseling for hereditary cancer. Oncology 10:27-34.PubMedGoogle Scholar
  26. Menko FH, Whijnen JTH, Vasen HFA, Oosterwijk MH (1996) Genetic counseling in hereditary nonpolyposis colorectal cancer. Oncology 10:71-76.PubMedGoogle Scholar
  27. Miki Y, Swensen J, Shattuck-Eidens D, Futreal PA, Harchman K, Tavtigian S, Liu Q, Rosenthal J, Hussey C, Tran T, McClure M, Frye C, Hattier T, Phelps R, Haugen-Strano A, Katcher H, Yakumo K, Gholami Z, Shaffer D, Stone S, Bayer S, Wray C, Bogden R, Dayananth P, Ward J, Tonin P, Narod S, Bristow PK, Norris FH, Helvering L, Morrison P, Rosteck P, Lai M, Barrett JC, Lewis C, Neuhausen S, Cannon-Albright L, Goldgar D, Wiseman R, Kamb A, Skolnick MH (1994) A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science 266:66-71.PubMedGoogle Scholar
  28. Mulvihill JJ, Safyer AW, Bening JK (1982) Prevention in familial breast cancer: Counseling and prophylactic mastectomy. Prev Med 11:500-511.PubMedGoogle Scholar
  29. Mulvihill JJ (1993) Genetic counseling of the cancer patient. In: DeVita VT, Jr, Hellman S, Rosenberg SA (eds) Cancer Principles and Practices of Oncology (4th Ed.). Philadelphia: Lippincott, pp 2529-2537.Google Scholar
  30. Nicolaides NC, Papadopoulos N, Liu B, Wei Y-F, Carter KC, Ruben SM Rosen CA, Haseltine WA, Fleischmann RD, Fraser CM, Adams MD, Venter JC, Dunlop MG, Hamilton SR, Peterson GM, de la Chapelle A, Vogelstein B, Kinzler KW (1994) Mutations of two PMS homologues in hereditary nonpolyposis colon cancer. Nature 371:75-80.PubMedGoogle Scholar
  31. Olopade OI, Cummings S (1996a) Genetic counseling for cancer Part I. Prin Pract Oncol 10(1):1-13.Google Scholar
  32. Olopade OI, Cummings S (1996b) Genetic counseling for cancer Part II. Prin Pract Oncol 10(2):1-13.Google Scholar
  33. Papadopoulos N, Nicolaides NC, Wei Y-F, Ruben SM, Carter KC, Rosen CA, Haseltine WA, Fleischmann RD, Fraser CM, Adams MD, Venter JC, Hamiliton SR, Peterson GM, Watson P, Lynch HT, Peltomaki P, Mecklin J-P, de la Chapelle A, Kinzler KW, Vogelstein B (1994) Mutation of a mutL homolog in hereditary colon cancer. Science 263:1625-1629.PubMedGoogle Scholar
  34. Parry DM, Mulvihill JJ, Miller RW, Berg K, Carter CL (1987a) Strategies for controlling cancer through genetics. Cancer Res 47:6814-6817.PubMedGoogle Scholar
  35. Parry DM, Berg K, Mulvihill JJ, Carter CL, Miller RW (1987b) Strategies for controlling cancer through genetics: Report of a workshop. Am J Hum Genet 41:63-69.PubMedGoogle Scholar
  36. Peters JA (1994) Familial cancer risk: Impact on today's oncology practice. J Oncol Mgmt September/October:18-30.Google Scholar
  37. Peters JA, Stopfer JE (1996) Role of the genetic counselor in familial cancer. Oncology 10:159-166.PubMedGoogle Scholar
  38. Richards MPM, Hallowell N, Green JM, Murton F, Statham H (1995) Counseling families with hereditary breast and ovarian cancer: A psychological perspective. J Genet Couns 4:219-233.Google Scholar
  39. Schneider KA (1994) Counseling About Cancer: Strategies for Genetic Counselors. Massachusetts: Graphic Illusions.Google Scholar
  40. Stadler MP, Mulvihill JJ (1995) Establishing a cancer genetics program in an academic medical center. Am J Hum Genet 57:A348.Google Scholar
  41. Stadler MP, Mulvihill JJ (1996) After cancer risk counseling: Consultands satisfaction and subsequent behavior. Am J Hum Genet 59:A7.Google Scholar
  42. Stefanek ME (1990) Counseling women at high risk for breast cancer. Oncology 4:27-38.PubMedGoogle Scholar
  43. Wooster R, Bignell G, Lancaster J, Swift S, Seal S, Mangion J, Collins N, Gregory S, Gumbs C, Micklem G, Barfoot R, Hamoudi R, Patel S, Rice C, Biggs P, Hashim Y, Smith A, Connor F, Arason A, Gudmundsson J, Ficenec D, Kelsell D, Ford D, Tonin P, Bishop DT, Spurr NK, Ponder BAJ, Eeles R, Peto J, Devilee P, Cornelisse C, Lynch H, Narod S, Lenoir G, Egilsson V, Barkadottir RB, Easton DF, Bentley DR, Futreal PA, Ashworth A, Stratton MR (1995) Identification of the breast cancer susceptibility gene BRCA2. Nature 378:789-792.PubMedGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 1998

Authors and Affiliations

  • Mona Penles Stadler
    • 1
    • 2
  • John J. Mulvihill
    • 1
    • 2
  1. 1.Department of Human GeneticsUniversity of PittsburghPittsburgh
  2. 2.Cancer Genetics Program, Magee-Womens Hospital and theUniversity of Pittsburgh Medical CenterPittsburgh

Personalised recommendations