Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National S
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PROFESSIONAL ISSUES
Essential Elements of Genetic Cancer Risk Assessment, Counseling, and Testing: Updated Recommendations of the National Society of Genetic Counselors Bronson D. Riley & 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
Received: 9 November 2011 / Accepted: 16 November 2011 / Published online: 2 December 2011 # National Society of Genetic Counselors, Inc. 2011
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
J. O. Culver Division of Clinical Cancer Genetics, City of Hope, Duarte, CA, USA
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.
C. Skrzynia Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
Keywords Cancer genetic counseling . Risk assessment . Genetic testing . Family history . Psychosocial assessment . Hereditary cancer . Informed consent
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 mem
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