ADDENDUM: Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors

Abstract Tumor predisposition syndromes may be under-recognized in neuro-oncology practice. Identifying patients with a hereditary tumor predisposition permits appropriate tumor management as well as surveillance and risk-reduction measures for patients and their families. The American College of Medical Genetics and Genomics and the National Society of Genetic Counselors recently published referral guidelines for tumor predisposition assessment, providing an impetus to review the use of genetic counseling in neuro-oncology and to describe features of the less stereotypic conditions from the perspective of neuro-oncology practice. This review also provides a framework for the identification and management of these conditions, as well as references to guidelines and resources for providers and patients.

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Research in Genetic Counseling

Advanced Genetic Counseling ◽

10.1093/med/9780190626426.003.0010 ◽

2019 ◽

pp. 171-186

Author(s):

Barbara B. Biesecker ◽

Kathryn F. Peters ◽

Robert Resta

Keyword(s):

Genetic Counseling ◽

Self Regulation ◽

Well Being ◽

Genetic Counselors ◽

National Society ◽

Patient Reported ◽

Key Variables ◽

Regulation Model

The field of genetic counseling has historically valued the role of research. More recently, graduate programs have raised the standards for student thesis projects so that a greater percent are of publishable quality. The profession has acknowledged key research gaps, such as a lack of consensus on the primary client outcomes of counseling. Further, the National Society of Genetic Counselors has endorsed the importance of evidence that may be used to guide practice. Herein we present the role of genetic counselors as researchers and discuss approaches to designing research studies to answer key service delivery questions and patient-reported outcomes. To frame research in genetic counseling, health behavior and social psychology theories offer models for identifying key variables likely to predict client decisions and their outcomes. To date, studies in genetic counseling have been framed by the self-regulation model and the theory of planned behavior. A systematic review of randomized controlled trials in genetic counseling identified psychological well-being and gain in knowledge as the most prevalent patient outcomes. Evidence can be used to predict decisions to undergo genetic testing or follow up on results.

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Definitions and Goals of Genetic Counseling

Advanced Genetic Counseling ◽

10.1093/med/9780190626426.003.0003 ◽

2019 ◽

pp. 21-42

Author(s):

Barbara B. Biesecker ◽

Kathryn F. Peters ◽

Robert Resta

Keyword(s):

Genetic Counseling ◽

Graduate Training ◽

Predictive Testing ◽

Genetic Counselors ◽

National Society ◽

Informed Decision Making ◽

Practice Model ◽

Potential Value ◽

Cancer Setting ◽

Definition Of

The definition of genetic counseling has evolved from being proscriptive to the triumvirate of patient education, facilitating informed decision making, and adaptation to a risk or condition. This definition, endorsed by the National Society of Genetic Counselors, has been widely cited and used in graduate training around the globe. Despite significant advances in the roles of genetic counselors, the central tenets of counseling remain. Our practice model was previously described as psychoeducational but has evolved to psychotherapeutic to emphasize relational counseling. The goals of genetic counseling are specific, vary by subspecialty, and evolve with advances in genomic science. In the cancer setting much of genetic counseling is about cancer risk and the potential value of predictive testing to inform choices, whereas in the pediatric setting, the goal is to diagnose or determine a cause for a child’s condition.

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