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How to establish a high-risk cancer genetics clinic: Limitations and successes

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Abstract

The development of technology to locate and isolate cancer susceptibility genes has brought together the fields of oncology, cancer control, genetics, and genetic counseling to create a new specialty of cancer risk counseling with the goal to communicate more accurate information about personal cancer risk profiles based on personal and family histories. As cancer risk assessment and counseling services become standard of care in medical practice, their availability is increasingly moving from comprehensive cancer centers and academic institutions to community settings. High-risk cancer genetics clinics in the community face several challenges, including staffing, time commitment, costs, and unique quality control issues. The societal benefits include a more educated public armed with the information needed to make health decisions appropriate for the individual level of risk.

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References and Recommended Reading

  1. Baty B, Venne V, McDonald J, et al.: BRCA1 testing: genetic counseling protocol development and counseling issues. J Genet Counsel 1997, 6:223–244.

    Article  Google Scholar 

  2. American Society of Clinical Oncology Policy Statement Update: genetic testing for cancer susceptibility. J Clin Oncol 2003, 21:1–6. This key article provides recommendations for genetic testing for cancer susceptibility established by the American Society of Clinical Oncology. Included are indications for counseling and further medical management, regulation of genetic testing, and other special issues.

  3. Oncology Nursing Society: The role of the oncology nurse in cancer genetic counseling. http://www.ons.org/publications/ positions/CancerGeneticCounseling.html. 2001.

  4. National Comprehensive Cancer Network: NCCN practice guidelines: Genetics/familial high-risk cancer. Oncology 1999, 13:161–186.

    Google Scholar 

  5. Freedman AN, Wideroff L, Olson L, et al.: US physicians’ attitudes toward genetic testing for cancer susceptibility. Am J Med Genet 2003, 120A:63–71.

    Article  CAS  PubMed  Google Scholar 

  6. Sweet KM, Bradley TL, Westman JA: Identification and referral of families at high risk for cancer susceptibility. J Clin Oncol 2002, 20:528–537. This is an important study demonstrating the value of collecting accurate family history information to identify individuals needing further assessment for their cancer risk.

    Article  PubMed  Google Scholar 

  7. Hofman KJ, Tambor ES, Chase GA, et al.: Physicians’ knowledge of genetics and genetic tests. Acad Med 1993, 68:625–632.

    Article  PubMed  CAS  Google Scholar 

  8. Wideroff L, Vadaparampil S, Green MH, et al.: Hereditary breast/ovarian and colorectal cancer genetics knowledge in a national sample of U.S. physicians. J Med Genet 2005, in press. [EPub ahead of print].

  9. Wilson BJ, Torrance N, Mollison J, et al.: Improving the referral process for familial breast cancer genetic counseling: findings of three randomized controlled trials of interventions. Health Technol Assess 2005, 9:1–126.

    PubMed  CAS  Google Scholar 

  10. Green MJ, Peterson SK, Baker MW, et al.: Effect of a computerbased decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility. JAMA 2004, 292:442–452.

    Article  PubMed  CAS  Google Scholar 

  11. Surh LC, Wright PG, Capelli M, et al. (The Molecular Genetic Study Group): Delivery of molecular genetic services within a health care system: time analysis of the clinical workload. Am J Hum Genet 1995, 56:760–768.

    PubMed  CAS  Google Scholar 

  12. Griffith GL, Tudor-Edwards R, Gray J, et al.: A micro costing of NHS cancer genetics services. Br J Cancer 2005, 92:60–71.

    Article  PubMed  CAS  Google Scholar 

  13. Lawrence WF, Peshkin BN, Liang W, et al.: Cost of genetic counseling and testing for BRCA1 and BRCA2 breast cancer susceptibility mutations. Cancer Epid Biomarkers Prev 2001, 10:475–481.

    CAS  Google Scholar 

  14. Lemon SJ, Tinley ST, Fusaro RM, Lynch HT: Cancer risk assessment in a hereditary cancer prevention clinic and its first year experience. Cancer 1997, 80:606–613.

    Article  Google Scholar 

  15. Wagner Costalas J, Itzen M, Malick J, et al.: Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. Am J Med Genet 2003, 119:11–18.

    Article  Google Scholar 

  16. Fraser L, Bramald S, Chapman C, et al.: What motivates interest in attending a familial cancer genetics clinic? Fam Cancer 2003, 2:159–168.

    Article  PubMed  CAS  Google Scholar 

  17. Armstrong K, Weber B, Ubel PA, et al.: Interest in BRCA1/2 testing in a primary care population. Prevent Med 2002, 34:590–595.

    Article  Google Scholar 

  18. Thompson HS, Valdimarsdottir HB, Jandorf L, Redd W:Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African Americans, Latina and Caucasian women. Patient Ed Counsel 2002, 51:217–227.

    Article  Google Scholar 

  19. Baty BJ, Kinney AY, Ellis SM: Developing culturally sensitive cancer genetic communication aids for African Americans. Am J Med Genet 2003, 118A:146–155.

    Article  PubMed  Google Scholar 

  20. Murray TH: Genetic exceptionalism and future diaries: Is genetic information different from other medical information? In Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. Edited by Rothstein MA. New Haven, CT: Yale Univ Press; 1997:60–73.

    Google Scholar 

  21. Green MJ, Botkin JR: "Genetic exceptionalism" in medicine: Clarifying the differences between genetic and non-genetic tests. Ann Intern Med 2003, 138:571–575.

    PubMed  Google Scholar 

  22. Moller P: Costs and benefits of diagnosing familial breast cancer. Ann Oncol 2004, 15:i55-i59.

    Article  PubMed  Google Scholar 

  23. Peters JA: Familial cancer risk part I: impact on today’s oncology practice. J Oncol Manage 1994, Sept/Oct:20–30.

  24. Lim J, Macluran M, Price M, et al. (kConFab Psychosocial Group): Short- and long-term impact of receiving genetic mutation results in women at increased risk for hereditary breast cancer. J Genet Counsel 2004, 13:115–133.

    Article  Google Scholar 

  25. Sein E, Mazzoni S, Masny A, Stearman B: Process evaluation of community-based cancer risk assessment programs. Oncology Issues 2004, Nov/Dec:32–36.

  26. National Society of Genetic Counselors, Inc. Membership Trends, 1980–2002 and Professional Status Survey. http://www.nsgc.org/careers/PSS_index.asp. 2004.

  27. Greco KE, Mahon SM: Genetics nursing practice enters a new era with credentialing. Internet J Adv Pract Nursing 2003, 5:1523–6064.

    Google Scholar 

  28. SACGHS: Proceedings from the Secretary’s Advisory Committee on Genetics Health and Society, Report on Genetic Exceptionalism. http://www4.od.nih.gov/oba/sacghs.htm. March 2004.

  29. Carmona RH, Wattendorf DJ: Personalizing prevention: the U.S. Surgeon General’s Family History Initiative. Am Fam Physician 2005, 71:36–39.

    PubMed  Google Scholar 

  30. Bogen TL, Augustine KM: Operating a comprehensive highrisk breast cancer management program in a community hospital setting. AWHONN Lifelines 2004, 8:435–440.

    Google Scholar 

  31. Roesser KA, Mullineaux LG: Genetic Testing and Hereditary Cancer: Implications for Nurses. Pittsburgh: Oncology Education Services, Inc; 2005. This educational monograph is an independent study for nurses interested in learning about hereditary types of cancer, identifying patients at risk for such cancers, the various types of genetic tests for common hereditary cancer syndromes, and the role of genetic education in various levels of practice.

    Google Scholar 

  32. Ho C: How to develop and implement a cancer genetics risk assessment program: clinical and economic considerations. Oncol Issues 2004, 19:22–26. This interesting article discusses the costs of establishing cancer risk assessment programs as well as the downstream revenues generated by such programs.

    Google Scholar 

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Authors and Affiliations

  1. Fox Chase Cancer Center, 333 Cottman Avenue, 19111-2497, Philadelphia, PA, USA

    Mary B. Daly MD, PhD, Beth Stearman MPH, Agnes Masny RN, MPH, MSN, CRNP, Elaine Sein RN, BSN, OCN & Susan Mazzoni MPH

Authors
  1. Mary B. Daly MD, PhD
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  2. Beth Stearman MPH
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  3. Agnes Masny RN, MPH, MSN, CRNP
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  4. Elaine Sein RN, BSN, OCN
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  5. Susan Mazzoni MPH
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Daly, M.B., Stearman, B., Masny, A. et al. How to establish a high-risk cancer genetics clinic: Limitations and successes. Curr Oncol Rep 7, 469–474 (2005). https://doi.org/10.1007/s11912-005-0012-2

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  • DOI: https://doi.org/10.1007/s11912-005-0012-2

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