title: A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships.
abstract: This study assessed the impact of genetic testing for cancer susceptibility on family relationships and determinants of adverse consequences for family relationships. Applicants for genetic testing of a known familial pathogenic mutation in BRCA1/2 or a HNPCC related gene (N=271) rated the prevalence and nature of changes in family relationships, familial difficulties and conflicts due to genetic testing 6 months after receiving the test result. The level of family functioning, differentiation from parents, support and familial communication style regarding hereditary cancer were assessed before receiving the test result. Genetic testing affected some family relationships in a positive way (37%), i.e. by feeling closer, improved communication and support, more appreciation of the relative and relief of negative test result. A minority reported unwanted changes in relationships (19%), problematic situations (13%) or conflicts (4%). Adverse effects comprised feelings of guilt towards children and carrier siblings, imposed secrecy and communication problems. Predictors of adverse consequences on family relationships were reluctance to communicate about hereditary cancer with relatives and disengaged-rigid or enmeshed-chaotic family functioning. Open communication between relatives should be stimulated because a lack of open communication may be an important determinant of familial adverse effects.
authors.affiliation: Department of Clinical Genetics, Erasmus MC, University Medical Center Rotterdam, Westzeedijk 114, 3016 AH Rotterdam, The Netherlands. i.vanoostrom@erasmusmc.nl
authors.forename: Iris
authors.initials: I
authors.lastname: van Oostrom
authors.forename: Hanne
authors.initials: H
authors.lastname: Meijers-Heijboer
authors.forename: Hugo J
authors.initials: HJ
authors.lastname: Duivenvoorden
authors.forename: Annette H J T
authors.initials: AH
authors.lastname: Bröcker-Vriends
authors.forename: Christi J
authors.initials: CJ
authors.lastname: van Asperen
authors.forename: Rolf H
authors.initials: RH
authors.lastname: Sijmons
authors.forename: Caroline
authors.initials: C
authors.lastname: Seynaeve
authors.forename: Arthur R
authors.initials: AR
authors.lastname: Van Gool
authors.forename: Jan G M
authors.initials: JG
authors.lastname: Klijn
authors.forename: Samantha R
authors.initials: SR
authors.lastname: Riedijk
authors.forename: Silvia
authors.initials: S
authors.lastname: van Dooren
authors.forename: Aad
authors.initials: A
authors.lastname: Tibben
mesh_terms: D000328:Adult; D019313:BRCA1 Protein / Q000235:genetics*; D024682:BRCA2 Protein / Q000235:genetics*; D001943:Breast Neoplasms / Q000453:epidemiology / Q000235:genetics / Q000523:psychology; D015179:Colorectal Neoplasms / Q000453:epidemiology / Q000235:genetics / Q000523:psychology; D003142:Communication; D003710:Demography; D005190:Family / Q000523:psychology*; D005195:Family Relations; D005260:Female; D020022:Genetic Predisposition to Disease; D006801:Humans; D008297:Male; D010051:Ovarian Neoplasms / Q000453:epidemiology / Q000235:genetics / Q000523:psychology; D017354:Point Mutation / Q000235:genetics; D011446:Prospective Studies; D011795:Surveys and Questionnaires
chemical_list: D019313:BRCA1 Protein; D024682:BRCA2 Protein