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Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients
Author(s) -
Claes Erna,
EversKiebooms Gerry,
Boogaerts Andrea,
Decruyenaere Marleen,
Denayer Lieve,
Legius Eric
Publication year - 2002
Publication title -
american journal of medical genetics part a
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.064
H-Index - 112
eISSN - 1552-4833
pISSN - 1552-4825
DOI - 10.1002/ajmg.a.10868
Subject(s) - genetic testing , genetic counseling , family history , context (archaeology) , breast cancer , medicine , cancer , ovarian cancer , test (biology) , predictive testing , family medicine , clinical psychology , genetics , biology , paleontology
Abstract The psychological aspects of genetic testing for hereditary breast and ovarian cancer (HBOC) in cancer patients ( diagnostic genetic testing) have so far received less attention than predictive genetic testing in unaffected persons. Our study is aimed at gaining insight into the psychological aspects of diagnostic genetic testing and at formulating practical recommendations for counseling. Cancer patients often play a key role in the communication of information to relatives because they were the first individuals to be tested in the family. The present article focuses on the communication to close and distant relatives about the hereditary cancer, the genetic test and its result. Participants previously diagnosed with breast and/or ovarian cancer, with a family history of these cancers and who requested DNA‐testing, were eligible for the study. Of the 83 eligible patients who could be contacted, 63 participated (response rate = 76%). Twenty‐six participants were members of a family where a BRCA1 or BRCA2 mutation was detected. The DNA‐analysis in the family of 37 participants had not revealed any mutation. Data were collected by semi‐structured interviews and psychological tests and questionnaires. The dissemination of information was largely focused on first‐degree relatives. Communication to distant relatives about the genetic test and its result was problematic. Other than the genetic test result and age as “objective” predictors of informing distant relatives, little and/or superficial contact seemed to be the major subjective barrier to informing distant relatives. Furthermore, the knowledge about HBOC of these messengers reveals several shortcomings. Communication within the family should receive special attention during counseling. © 2002 Wiley‐Liss, Inc.