Seminars in Oncology
Volume 34, Issue 5 , Pages 369-378 , October 2007

Practical Aspects of Delivering Hereditary Cancer Risk Counseling

  • Tiffani A. DeMarco

      Affiliations

    • Jess and Mildred Fisher Center for Familial Cancer Research, Georgetown University, Lombardi Comprehensive Cancer Center, Washington, DC.
    • Corresponding Author InformationAddress correspondence to Tiffani A. DeMarco, MS, Georgetown University, 3300 Whitehaven St NW, Suite 4100, Washington, DC 20007.
    • ,
  • Karen L. Smith

      Affiliations

    • Jess and Mildred Fisher Center for Familial Cancer Research, Georgetown University, Lombardi Comprehensive Cancer Center, Washington, DC.
    • Washington Hospital Center, Washington Cancer Institute, Washington, DC.
    • ,
  • Rachel H. Nusbaum

      Affiliations

    • Jess and Mildred Fisher Center for Familial Cancer Research, Georgetown University, Lombardi Comprehensive Cancer Center, Washington, DC.
    • ,
  • Beth N. Peshkin

      Affiliations

    • Jess and Mildred Fisher Center for Familial Cancer Research, Georgetown University, Lombardi Comprehensive Cancer Center, Washington, DC.
    • ,
  • Marc D. Schwartz

      Affiliations

    • Jess and Mildred Fisher Center for Familial Cancer Research, Georgetown University, Lombardi Comprehensive Cancer Center, Washington, DC.
    • ,
  • Claudine Isaacs

      Affiliations

    • Jess and Mildred Fisher Center for Familial Cancer Research, Georgetown University, Lombardi Comprehensive Cancer Center, Washington, DC.

References 

  1. Trepanier A, Ahrens M, McKinnon W, et al. Genetic cancer risk assessment and counseling: recommendations of the National Society of Genetic Counselors. J Gene Counsel. 2004;13:83–114
  2. Statement of the American Society of Clinical Oncology: Genetic testing for cancer susceptibility. J Clin Oncol. 1996;14:1730–1736
  3. American Society of Clinical Oncology: American Society of Clinical Oncology policy statement update: Genetic testing for cancer susceptibility. J Clin Oncol. 2003;21:2397–2406
  4. American Gastroenterological Association: American Gastroenterological Association medical position statement: hereditary colorectal cancer and genetic testing. Gastroenterology. 2001;121:195–197
  5. Shroy PC, Barrison AF, Ling BS, et al. Family history and colorectal cancer screening: A survey of physicians knowledge and practice patterns. Am J Gastroenterol. 2002;97:1031–1036
  6. Culver JO, Hull JL, Dunne DFB, et al. Oncologists’ opinions on genetic testing for breast and ovarian cancer. Genet Med. 2001;3:120–125
  7. Giardello FM, Brensinger JD, Petersen GM, et al. The use and interpretation of commercial APC gene testing for familial adenomatous polyposis. N Engl J Med. 1997;336:823–827
  8. Alvarado M, Bars J, Carr AG, et al. Cancer genetic counseling starter packet. 2001;June, http://www.nsgc.org/members_only/tools/csp_disclaimer.cfm (accessed 11/30/2006)
  9. Ho C. How to develop and implement a cancer genetics risk assessment service: Clinical and economic considerations. Oncol Iss Nov/Dec. 2004;22-26
  10. DeMarco TA, Loffredo CA, Sampilo ML, et al. On using a cancer center cancer registry to identify newly affected women eligible for hereditary breast cancer syndrome testing: Practical considerations. J Genet Counsel. 2006;15:129–136
  11. Affleck P. The challenge of recruitment. Nurs Res. 2005;13:78–84
  12. Roche CA, Lucas MR, Hughes KS. Development of a risk assessment clinic. In:  Vogel VG editors. Management of Patients at High Risk for Breast Cancer. Malden, MA: Blackwell Science; 2001;p. 166–182
  13. Peters JA. Familial cancer risk: I. Impact on today’s oncology practice. J Oncol Manage Sept-Oct. 1994;20-30
  14. Oncology Nursing Society: The role of the oncology nurse in cancer genetic counseling: A position paper, 1997. Oncol Nurs Forum. 1998;25:463
  15. Oncology Nursing Society: Cancer genetic testing and risk assessment counseling: A position paper, 1997. Oncol Nurs Forum. 1998;25:464
  16. Lerman C, Croyle RT. Emotional and behavioral responses to genetic testing for susceptibility to cancer. Oncology. 1996;10:191–199
  17. Lerman C. Psychological issues in genetic testing for breast cancer susceptibility. Arch Intern Med. 1994;15:609–615
  18. Pettersen B, Doyle DL, Cohen L, et al: Primer on Billing and Reimbursement, November 1, 2003. Available at http://www.nsgc.org/members_only/tools/br_index.cfm (accessed 11/28/2006)
  19. National Society of Genetic Counselors. Billing and Reimbursement Toolkit. Available at http://www.nsgc.org/members_only/tools/br_index.cfm (accessed 11/30/2006)
  20. Griffith AG, Edwards RT, Gray J, et al. Cancer genetics services: A systematic review of the economic evidence and issues. Br J Cancer. 2004;90:1697–1703
  21. Myriad Genetic Laboratories, Inc. Genetic testing for hereditary cancer syndromes: Billing for patient education. Available at http://www.myriadresourceguide.com/billing/billing.htm (accessed 11/21/2006)
  22. Draft Report of the Secretary’s Advisory Committee on Genetics, Health, and Society: Coverage and reimbursement of genetic tests and services. In: Public Comment Draft. 2005;p. 1–54
  23. American Medical Association. The Current Procedural Coding System. Available at http://www.ama-asn.org/ama/pub/category/3113.html (accessed 11/30/2006)
  24. United States Department of Health and Human Services-Centers for Disease Control and Prevention. The International Classification of Diagnoses, Ninth Revision, Clinical Modification (ICD-9-CM). Available at http://www.cdc.gov/nchs/about/otheract/icd9/abticd9.htm (accessed 11/30/2006)
  25. Myriad Genetic Laboratories, Inc. Myriad reimbursement assistance service (MRAP). Available at http://www.myriadtests.com/mrap.htm (accessed 10/16/2006)
  26. Myriad Genetic Laboratories, Inc: External Price List (4/15/06). Available upon request at info @myriad.com
  27. City of Hope National Medical Center: Clinical molecular diagnosis laboratory. Available at http://www.cityof hope.org/cmdl/ (accessed 11/28/2006)
  28. Myriad Genetic Laboratories, Inc. Available at www.myriad.com (accessed 11/27/2006)
  29. Shappel HL, Matloff ET. Writing effective insurance justification letters for cancer genetic testing: a streamlined approach. J Genet Counsel. 2001;10:331–341
  30. Myriad Genetic Laboratories, Inc. Sample LMNs. Available at http://www.myriadtests.com/provider/doc/lmn.brac.doc (accessed 11/30/2006)
  31. Centers for Medicare and Medicaid Services. Medicare Coverage Database. Available at http://www.cms.hhs.gov/mcd/viewlcd.asp?lcd_id=9741&lcd_version=13&show=all (accessed 11/30/2006)
  32. Centers for Medicare and Medicaid Services. Available at http://www.cms.hhs.gov/home/medicaid.asp (accessed 11/30/2006)
  33. Financial Hardship Assistance Packet (PDF format). Available upon request from info @ myriad.com (accessed 11/30/2006)
  34. Lindor NM, Greene MH. The concise handbook of familial cancer syndromes (Mayo Familial Cancer Program). J Natl Cancer Inst. 1998;90:1039–1071
  35. Schneider K, Garber J. Counseling About Cancer: Strategies for Genetic Counselor. (ed 2). New York, NY: Wiley; 2001;
  36. Gail MH, Brinton LA, Byar DB, et al. Projecting individualized probabilities of developing breast cancer for white females who are being examined annually. J Natl Cancer Inst. 1989;81:1879–1886
  37. Offit K, Brown K. Quantitating familial cancer risk: A resource for clinical oncologists. J Clin Oncol. 1994;12:1724–1736
  38. CancerGene. Available at http://www4.southwestern.edu/breasthealth/cagene/default.asp (accessed 11/30/2006)
  39. Kang HH, Williams R, Leary J, et al. Evaluation of models to predict BRCA germline mutations. Br J Cancer. 2006;95:914–920
  40. Offit K, Groeger E, Turner S, et al. The “duty to warn” a patient’s family members about hereditary disease risks. JAMA. 2004;292:1469–1473
  41. Peshkin BA, DeMarco TA, Brogan BM, et al. BRCA1/2 testing: Complex themes in result interpretation. J Clin Oncol. 2001;19:2555–2565
  42. DeMarco TA, Peshkin BN, Brogan BB. Across the spectrum: cases studies in genetic counseling for breast and ovarian cancer susceptibility. J Genet Counsel. 2001;10:379–395
  43. National Human Genome Research Institute: Genetic discrimination. Available at http://www.genome.gov/10002077#2 (accessed 11/27/2006)
  44. Georgetown University Health Policy Institute: Consumer guides for getting and keeping health insurance. Available at http://www.healthinsuranceinfo.net (accessed 11/30/2006)
  45. Harris M, Winship I, Spriggs M. Controversies and ethical issues in cancer-genetics clinics. Lancet Oncol. 2005;6:301–310
  46. Council on Ethical and Judicial Affairs of the American Medical Association, Opinion E-2.131: Disclosure of familial risk in genetic testing: American Medical Association, code of medical ethics. Available at: http://www.ama-assn.org/apps/pf_new/pf_online?f_n=resultLink&doc=policyfiles/HnE/E-2.131.HTM&s_t=familial+risk&catg=AMA/HnE&catg=AMA/BnGnC&catg=AMA/DIR&&nth=1&&st_p=0&nth=1& (accessed November 27, 2006)
  47. Knoppers B, Strom C, Clayton E, et al. Professional disclosure of familial genetic information. Am J Hum Genet. 1998;62:474–483
  48. Mitchell JA, Demiris G. Telegenetics: The next phase in the provision of genetic services?. Genet Med. 2005;7:1–2
  49. Coelho JJ, Arnold A, Nayler J, et al. An assessment of the efficacy of cancer genetic counseling using real-time videoconferencing technology (telemedicine) compared to face-to-face consultations. Eur J Cancer. 2005;41:2257–2261
  50. Ormond KE, Haun J, Cook L, et al. Recommendations for telephone counseling. J Genet Counsel. 2000;9:63–71
  51. Wang VO. Commentary: What is and is not telephone counseling?. J Genet Counsel. 2000;9:73–82
  52. Sangha KK, Dircks A, Laglois S. Assessment of the effectiveness of genetic counseling by telephone compared to a clinic visit. J Genet Counsel. 2003;13:171–184
  53. National Institutes of Health, Clinical Trials. Telephone-based genetic counseling or standard genetic counseling in women at risk of carrying the BRCA1 or BRCA2 mutation-Identifier-NCT00287898. Available at http://www.clinicaltrials.gov (accessed 10/13/2006)
  54. Wolfberg AJ. Genes on the web: Direct to consumer marketing of genetic testing. N Engl J Med. 2006;355:543–545
  55. DNA direct. http://www.dnadirect.com (accessed 10/13/2006)
  56. Gray S, Olopode OI. Direct to consumer marketing of genetic tests for cancer: Buyer beware. J Clin Oncol. 2003;21:3191–3193
  57. Gollust SE, Wilfond BS, Hill SC. Direct-to-consumer sales of genetic services on the internet. Genet Med. 2003;5:332–337
  58. Green MJ, Peterson SK, Baker MW, et al. Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: A randomized controlled trial. JAMA. 2004;292:442–452
  59. Kaufman EM, Peshkin BN, Lawrence WF, et al. Development of an interactive decision aid for female BRCA1/BRCA2 carriers. J Genet Counsel. 2003;12:109–129
  60. Epplein M, Koon KP, Ramsey SD, et al. Genetic services for familial cancer patients: A follow-up survey of national cancer institute cancer centers. J Clin Oncol. 2005;23:4713–4718

PII: S0093-7754(07)00140-6

doi: 10.1053/j.seminoncol.2007.07.003

Seminars in Oncology
Volume 34, Issue 5 , Pages 369-378 , October 2007

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