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Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors

  • Published:
Journal of Genetic Counseling

Abstract

These cancer genetic counseling recommendations describe the medical, psychosocial, and ethical ramifications of identifying at-risk individuals through cancer risk assessment with or without genetic testing. They were developed by members of the Practice Issues Subcommittee of the National Society of Genetic Counselors Cancer Genetic Counseling Special Interest Group. The information contained in this document is derived from extensivereview of the current literature on cancer genetic risk assessment and counseling as well as the personal expertise of genetic counselors specializing in cancer genetics. The recommendations are intended to provid information about the process of genetic counseling and risk assessment for hereditary cancer disorders rather than specific information about individual syndromes. Key components include the intake (medical and family histories), psychosocial assessment (assessment of risk perception), cancer risk assessment (determination and communication of risk), molecular testing for hereditary cancer syndromes (regulations, informed consent, and counseling process), and follow-up considerations. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care provider's professional judgment based on the clinical circumstances of a client.

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Authors and Affiliations

  1. Center for Molecular Medicine and Genetics, Wayne State University School of Medicine, Wayne State University, Detroit, Michigan

    Angela Trepanier

  2. Fairview University Medical Center, University of Minnesota, Minneapolis, Minnesota

    Mary Ahrens

  3. Vermont Regional Genetics Center, Familial Cancer Program, Burlington, Vermont

    Wendy McKinnon

  4. Cancer Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, National Institutes of Health, Department of Health and Human Services, Rockville, Maryland

    June Peters

  5. Cancer Risk Evaluation Program, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania

    Jill Stopfer

  6. Cancer Risk Assessment Counseling Program, Englewood-Mount Sinai, Englewood, New Jersey

    Sherry Campbell Grumet

  7. Myriad Genetics Laboratories, Inc., Salt Lake City, Utah

    Susan Manley & Terri Diamond Ferlita

  8. Fred Hutchinson Cancer Research Center, Seattle, Washington

    Julie O. Culver

  9. University of Alabama at Birmingham, Birmingham, Alabama

    Ronald Acton

  10. University of Iowa, Iowa City, Iowa

    Joy Larsen-Haidle

  11. V. I. Technologies, Inc., Watertown, Massachusetts

    Lori Ann Correia

  12. Division of Medical Genetics, University of Washington Medical Center, Seattle, Washington

    Robin Bennett

  13. Genetic Counseling of Central Oregon, Bend, Oregon

    Barbara Pettersen

  14. Fox Chase Cancer Center, Philadelphia, Pennsylvania

    Josephine Wagner Costalas

  15. University Hospital of New Mexico, University of New Mexico Health Sciences Center, Albuquerque, New Mexico

    Katherine Hunt

  16. Queen's Comprehensive Genetics Center, Honolulu, Hawaii

    Susan Donlon

  17. Department of Medicine, University of North Carolina, Chapel Hill, North Carolina

    Cecile Skrzynia

  18. Roswell Park Cancer Center, Buffalo, New York

    Carolyn Farrell

  19. Children's Medical Center, Dayton, Ohio

    Faith Callif-Daley

  20. Department of Medical Genetics, Mayo Clinic, Familial Cancer Program, Rochester, Minnesota

    Catherine Walsh Vockley

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  1. Angela Trepanier
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Trepanier, A., Ahrens, M., McKinnon, W. et al. Genetic Cancer Risk Assessment and Counseling: Recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling 13, 83–114 (2004). https://doi.org/10.1023/B:JOGC.0000018821.48330.77

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