scholarly journals Genetic Counseling for Neurofibromatosis 1, Neurofibromatosis 2, and Schwannomatosis—Practice Resource of the National Society of Genetic Counselors

2020 ◽  
Vol 29 (5) ◽  
pp. 692-714
Author(s):  
Heather B. Radtke ◽  
Amanda L. Bergner ◽  
Allison L. Goetsch ◽  
Caroline McGowan ◽  
Karin Panzer ◽  
...  
2019 ◽  
pp. 171-186
Author(s):  
Barbara B. Biesecker ◽  
Kathryn F. Peters ◽  
Robert Resta

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.


Author(s):  
Barbara B. Biesecker ◽  
Kathryn F. Peters ◽  
Robert Resta

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.


2019 ◽  
Vol 21 (10) ◽  
pp. 2404-2404
Author(s):  
Jill S. Goldman ◽  
Susan E. Hahn ◽  
Jennifer Williamson Catania ◽  
Susan LaRusse-Eckert ◽  
Melissa Barber Butson ◽  
...  

2005 ◽  
Vol 14 (4) ◽  
pp. 249-270 ◽  
Author(s):  
Allyn McConkie-Rosell ◽  
Brenda Finucane ◽  
Amy Cronister ◽  
Liane Abrams ◽  
Robin L. Bennett ◽  
...  

2006 ◽  
Vol 15 (2) ◽  
pp. 77-83 ◽  
Author(s):  
Robert Resta ◽  
Barbara Bowles Biesecker ◽  
Robin L. Bennett ◽  
Sandra Blum ◽  
Susan Estabrooks Hahn ◽  
...  

Author(s):  
Barbara B. Biesecker ◽  
Kathryn F. Peters ◽  
Robert Resta

The history of genetic counseling as a clinical practice ultimately has its roots in eugenics. Although medical geneticists distanced themselves from eugenic ideology after World War II, that separation was sometimes more in name than practice. The history of the genetic counseling profession does not have direct connections to eugenics, although the profession has since its inception been intimately connected with medical genetics and medical geneticists. Key historical moments in the emergence of genetic counseling as an independent profession include the creation of specialized master’s-level training programs beginning in 1969 at Sarah Lawrence College, the formation of a professional society (the National Society of Genetic Counselors), a professional certification process governed by genetic counselors separate from medical geneticists, the establishment of a professional journal, and working affiliations with a wide range of clinicians beyond medical geneticists such as obstetricians, oncologists, surgeons, cardiologists, and neurologists.


Author(s):  
Hannah E. Ison ◽  
Emily L. Griffin ◽  
Ashley Parrott ◽  
Amy R. Shikany ◽  
Lindsay Meyers ◽  
...  

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