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

Abstract

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.

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Disclaimer

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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Correspondence to Bronson D. Riley.

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Purpose

The National Society of Genetic Counselors (NSGC) is the primary leader for the genetic counseling profession. Its mission is to advance the various roles of genetic counselors in health care by fostering education, research, and public policy to ensure the availability of quality genetic services. To that end, the Society promotes the development of practice guidelines for genetic counselors and others who provide genetic counseling services. The purpose of this document is to present a current and comprehensive set of practice recommendations for effective genetic cancer risk assessment, counseling, and testing. These guidelines were developed by the NSGC’s Familial Cancer Risk Counseling Special Interest Group which includes NSGC members providing cancer genetics services.

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Riley, B.D., Culver, J.O., Skrzynia, C. et al. Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National Society of Genetic Counselors. J Genet Counsel 21, 151–161 (2012). https://doi.org/10.1007/s10897-011-9462-x

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Keywords

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