Genetic counseling issues in predictive genetic testing for familial adult-onset neurologic diseases

2001 ◽  
Vol 8 (3) ◽  
pp. 177-186 ◽  
Author(s):  
Catherine M. Burson ◽  
Kristina R. Markey
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Predictive Genetic Testing ◽  
Adult Onset ◽  
Neurologic Diseases

scholarly journals “It was the missing piece”: adolescent experiences of predictive genetic testing for adult-onset conditions

2013 ◽  
Vol 15 (8) ◽  
pp. 643-649 ◽  
Author(s):  
Cara Mand ◽  
Lynn Gillam ◽  
Rony E. Duncan ◽  
Martin B. Delatycki
Keyword(s):  
Genetic Testing ◽  
Predictive Genetic Testing ◽  
Adult Onset

scholarly journals An international survey of predictive genetic testing in children for adult onset conditions

2005 ◽  
Vol 7 (6) ◽  
pp. 390-396 ◽  
Author(s):  
Rony E Duncan ◽  
Julian Savulescu ◽  
Lynn Gillam ◽  
Robert Williamson ◽  
Martin B Delatycki
Keyword(s):  
Genetic Testing ◽  
Predictive Genetic Testing ◽  
International Survey ◽  
Adult Onset

Predictive genetic testing for adult-onset disorders in minors: a critical analysis of the arguments for and against the 2013 ACMG guidelines

2014 ◽  
Vol 87 (4) ◽  
pp. 301-310 ◽  
Author(s):  
J.A. Anderson ◽  
R.Z. Hayeems ◽  
C. Shuman ◽  
M.J. Szego ◽  
N. Monfared ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Critical Analysis ◽  
Predictive Genetic Testing ◽  
Adult Onset

scholarly journals Predictive Genetic Testing of Children for Adult-Onset Conditions: Negotiating Requests with Parents

2016 ◽  
Vol 26 (2) ◽  
pp. 244-250 ◽  
Author(s):  
Angela Fenwick ◽  
Mirjam Plantinga ◽  
Sandi Dheensa ◽  
Anneke Lucassen
Keyword(s):  
Genetic Testing ◽  
Predictive Genetic Testing ◽  
Adult Onset

scholarly journals The use of heuristics in genetic testing decision-making: A qualitative interview study

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0260597
Author(s):  
Bettina Maria Zimmermann ◽  
David Martin Shaw ◽  
Bernice Elger ◽  
Insa Koné
Keyword(s):  
Decision Making ◽  
Genetic Counseling ◽  
Genetic Testing ◽  
Hereditary Cancer ◽  
Predictive Genetic Testing ◽  
Hereditary Cancer Syndrome ◽  
Theory Approach ◽  
Hereditary Cancer Syndromes ◽  
Qualitative Interview Study ◽  
Cancer Syndromes

Background Decision-making concerning predictive genetic testing for hereditary cancer syndromes is inherently complex. This study aims to investigate what kind of complexities adults undergoing genetic counseling in Switzerland experience, how they deal with them, and what heuristics they use during the decision-making process. Methods Semi-structured qualitative interviews with eighteen Swiss adults seeking genetic counseling for hereditary cancer syndrome genetic testing and two counseling physicians were conducted and analyzed using a grounded theory approach. Results Counselees stated that once they were aware of their eligibility for genetic testing they perceived an inevitable necessity to make a decision in a context of uncertainties. Some counselees perceived this decision as simple, others as very complex. High emotional involvement increased perceived complexity. We observed six heuristics that counselees used to facilitate their decision: Anticipating the test result; Focusing on consequences; Dealing with information; Interpreting disease risk; Using external guidance; and (Re-)Considering the general uncertainty of life. Limitations Our findings are limited to the context of predictive genetic testing for hereditary cancer syndromes. This qualitative study does not allow extrapolation of the relative frequency of which heuristics occur. Conclusions The use of heuristics is an inherent part of decision-making, particularly in the complex context of genetic testing for inherited cancer predisposition. However, some heuristics increase the risk of misinterpretation or exaggerated external influences. This may negatively impact informed decision-making. Thus, this study illustrates the importance of genetic counselors and medical professionals being aware of these heuristics and the individual manner in which they might be applied in the context of genetic testing decision-making. Findings may offer practical support to achieve this, as they inductively focus on the counselees’ perspective.

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