Opening the psychological black box in genetic counseling

Leiden Repository

Opening the psychological black box in genetic counseling

Type: Doctoral Thesis
Title: Opening the psychological black box in genetic counseling
Author: Vos, Joël
Publisher: Department of Clinical Genetics, Faculty of Medicine, Leiden University Medical Center (LUMC), Leiden University
Issue Date: 2011-06-30
Keywords: Genetic counseling
Psycho oncology
Risk perception
Interpretation
Breast cancer
BRCA1/2
Ovarian cancer
Recollection
Nomenclature
Unclassified variant
Pathogenic mutation
Impact
Risk communication
Medical surveillance
Client centered
Family systems
Mediation analysis
Uncertainty
Abstract: Women from families in which many individuals have developed breast and/or ovarian cancer may request for DNA-testing. A DNA-test result may disclose their own risks to develop cancer (again), their relatives’ risks and subsequent options for medical surveillance. This thesis describes several multicenter studies in the Netherlands about the psychological and medical impact of DNA-testing on the lives of these women and their relatives. Despite their accurate understanding of the global meaning of DNA-test result, many participants interpreted the result differently from what the genetic-counselor had actually communicated. Like in a children’s whisper game, their relatives also misinterpreted the information communicated by the first messenger. The messengers’ misinterpretation was not only related to their inaccurate thoughts about heredity and cancer in general, but also to their feelings, and especially to their unfulfilled need for certainty, sense of self and unresolved existential issues. The presence of misinterpretations predicted the extent of the counselees' distress and the medical decisions after DNA-test result disclosure. The study results are described in their historical and theoretical context, followed by practical clinical suggestions for genetic-counselors and psychologists. For instance, we suggest that genetic-counselor try to avoid the communication of ambiguous DNA-test results that do not have medical consequences.
Description: Promotores: A. Tibben, A.M. Stiggelbout, Co-Promotor: C.J. van Asperen
With Summary in Dutch
Faculty: LUMC
Citation: Vos, J., 2011, Doctoral Thesis, Leiden University
ISBN: 9789090260464
Sponsor: KWF Kankerbestrijding
Handle: http://hdl.handle.net/1887/17748
 

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