Journal of Genetic Counseling

, Volume 21, Issue 2, pp 151–161 | Cite as

Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National Society of Genetic Counselors

  • Bronson D. RileyEmail author
  • Julie O. Culver
  • Cécile Skrzynia
  • Leigha A. Senter
  • June A. Peters
  • Josephine W. Costalas
  • Faith Callif-Daley
  • Sherry C. Grumet
  • Katherine S. Hunt
  • Rebecca S. Nagy
  • Wendy C. McKinnon
  • Nancie M. Petrucelli
  • Robin L. Bennett
  • Angela M. Trepanier
Professional Issues


Updated from their original publication in 2004, these cancer genetic counseling recommendations describe the medical, psychosocial, and ethical ramifications of counseling at-risk individuals through genetic 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 Familial Cancer Risk Counseling Special Interest Group. The information contained in this document is derived from extensive review 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 provide information about the process of genetic counseling and risk assessment for hereditary cancer disorders rather than specific information about individual syndromes. Essential components include the intake, cancer risk assessment, genetic testing for an inherited cancer syndrome, informed consent, disclosure of genetic test results, and psychosocial assessment. 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.


Cancer genetic counseling Risk assessment Genetic testing Family history Psychosocial assessment Hereditary cancer Informed consent 



The practice guidelines of the National Society of Genetic Counselors (NSGC) are developed by members of the NSGC to assist genetic counselors and other health care providers in making decisions about appropriate management of genetic concerns; including access to and/or delivery of services. Each practice guideline focuses on a clinical or practice-based issue, and is the result of a review and analysis of current professional literature believed to be reliable. As such, information and recommendations within the NSGC practice guidelines reflect the current scientific and clinical knowledge at the time of publication, are only current as of their publication date, and are subject to change without notice as advances emerge.

In addition, variations in practice, which take into account the needs of the individual patient and the resources and limitations unique to the institution or type of practice, may warrant approaches, treatments and/or procedures that differ from the recommendations outlined in this guideline. Therefore, these recommendations should not be construed as dictating an exclusive course of management, nor does the use of such recommendations guarantee a particular outcome. Genetic counseling practice guidelines are never intended to displace a health care provider’s best medical judgment based on the clinical circumstances of a particular patient or patient population. Practice guidelines are published by NSGC for educational and informational purposes only, and NSGC does not “approve” or “endorse” any specific methods, practices, or sources of information.


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Copyright information

© National Society of Genetic Counselors, Inc. 2011

Authors and Affiliations

  • Bronson D. Riley
    • 1
    Email author
  • Julie O. Culver
    • 2
  • Cécile Skrzynia
    • 3
    • 4
  • Leigha A. Senter
    • 5
  • June A. Peters
    • 6
  • Josephine W. Costalas
    • 7
  • Faith Callif-Daley
    • 8
  • Sherry C. Grumet
    • 9
  • Katherine S. Hunt
    • 10
  • Rebecca S. Nagy
    • 11
  • Wendy C. McKinnon
    • 12
  • Nancie M. Petrucelli
    • 13
  • Robin L. Bennett
    • 14
  • Angela M. Trepanier
    • 15
  1. 1.Southeast Nebraska Cancer CenterLincolnUSA
  2. 2.Division of Clinical Cancer GeneticsCity of HopeDuarteUSA
  3. 3.Department of MedicineUniversity of North Carolina at Chapel HillChapel HillUSA
  4. 4.Department of GeneticsUniversity of North Carolina at Chapel HillChapel HillUSA
  5. 5.Division of Human GeneticsOhio State UniversityColumbusUSA
  6. 6.Clinical Genetics Branch, Division of Cancer Epidemiology and GeneticsNational Cancer InstituteRockvilleUSA
  7. 7.St. Mary Regional Cancer CenterLanghorneUSA
  8. 8.Department of Medical GeneticsThe Children’s Medical Center of DaytonDaytonUSA
  9. 9.Leon Hess Cancer CenterMonmouth Medical CenterLong BranchUSA
  10. 10.Mayo College of MedicineScottsdaleUSA
  11. 11.Clinical Cancer Genetics Program, James Cancer Hospital and Solove Research InstituteOhio State UniversityColumbusUSA
  12. 12.Vermont Regional Genetics Center, Department of PediatricsFletcher Allen Health CareBurlingtonUSA
  13. 13.Karmanos Cancer InstituteDetroitUSA
  14. 14.Division of Medical GeneticsUniversity of Washington Medical CenterSeattleUSA
  15. 15.Center for Molecular Medicine and Genetics, School of MedicineWayne State UniversityDetroitUSA

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