A Decade of Genetic Counseling in Frontotemporal Dementia Affected Families: Few Counseling Requests and much Familial Opposition to Testing |
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Authors: | S R Riedijk M F N Niermeijer D Dooijes A Tibben |
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Institution: | (1) Department of Clinical Genetics, Erasmus Medical Centre, Westzeedijk 112, 3016 AH Rotterdam, The Netherlands;(2) Department of Medical Psychology and Psychotherapy, Erasmus Medical Centre Rotterdam Section of Clinical Genetics, Rotterdam, The Netherlands;(3) Department Anthropogenetics, University Medical Centre Nijmegen–St. Radboud, Nijmegen, The Netherlands;(4) Dept of Clinical Genetics, VU University Medical Center, Amsterdam, The Netherlands;(5) Centre of Human and Clinical Genetics, and Department Neurology, LUMC, Leiden, Netherlands |
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Abstract: | A decade of genetic counseling of frontotemporal dementia (FTD) affected families has generated two important observations.
First, the uptake rate for presymptomatic testing for FTD is low in our department of Clinical Genetics at the Erasmus Medical
Center in the Netherlands. Second, FTD at-risk counselees reported substantial familial opposition to genetic testing, which
is distinct from the attitude in Huntington Disease affected families. We hypothesize that the low acceptance for FTD genetic
counseling is consequential to the familial opposition and explain this within the theoretical framework of separation-individuation.
Furthermore, we hypothesize that separation-individuation problems do not similarly influence the acceptance of HD genetic
counseling, due to the educative role of the well-organised patient organization for HD in the Netherlands. We offer counseling
recommendations that serve to facilitate the individuation of the counselee with respect to the FTD genetic test. |
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