Literature DB >> 9215771

BRCA1 in the family: a case description of the psychological implications.

A C DudokdeWit1, A Tibben, P G Frets, E J Meijers-Heijboer, P Devilee, J G Klijn, J C Oosterwijk, M F Niermeijer.   

Abstract

Our experience with the first family in the Netherlands for whom predictive DNA-testing for Hereditary Breast and Ovarian Cancer (HBOC) became an option is described. This serves to illustrate the complex emotional impact on a family as a whole, and upon the members separately, of becoming aware that breast and ovarian cancer is hereditary, and the implications of undergoing predictive testing. All family members received genetic counseling and were offered pre- and post-test psychological follow-up. We observed two important roles within the family. One member became "the messenger of the news" informing the relatives of the hereditary character of cancer in the family. Another was "the first utilizer" of the new options; namely, the predictive DNA-test and preventive surgery. This first utilizer became the example to the rest of the family. Decisions made about preventive treatment (prophylactic ovariectomy and/or mastectomy) were based on the experiences within the family, whether one identified with an affected family member with breast or with ovarian cancer. The actions and reactions perceived were illustrative of what kind of support provisions should be provided in addition to the genetic and oncological counseling for HBOC. Moreover HBOC should be considered both as an individual and a family problem and be treated as such in genetic counseling.

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Year:  1997        PMID: 9215771     DOI: 10.1002/(sici)1096-8628(19970711)71:1<63::aid-ajmg12>3.0.co;2-t

Source DB:  PubMed          Journal:  Am J Med Genet        ISSN: 0148-7299


  21 in total

1.  Presymptomatic testing for BRCA1 and BRCA2: how distressing are the pre-test weeks? Rotterdam/Leiden Genetics Working Group.

Authors:  L N Lodder; P G Frets; R W Trijsburg; E J Meijers-Heijboer; J G Klijn; H J Duivenvoorden; A Tibben; A Wagner; C A van der Meer; P Devilee; C J Cornelisse; M F Niermeijer
Journal:  J Med Genet       Date:  1999-12       Impact factor: 6.318

2.  A qualitative study exploring genetic counsellors' experiences of counselling children.

Authors:  Fiona Ulph; James Leong; Cris Glazebrook; Ellen Townsend
Journal:  Eur J Hum Genet       Date:  2010-06-09       Impact factor: 4.246

Review 3.  Methodology in longitudinal studies on psychological effects of predictive DNA testing: a review.

Authors:  R Timman; T Stijnen; A Tibben
Journal:  J Med Genet       Date:  2004-07       Impact factor: 6.318

4.  Assessment of psychosocial outcomes in genetic counseling research: an overview of available measurement scales.

Authors:  Nadine A Kasparian; Claire E Wakefield; Bettina Meiser
Journal:  J Genet Couns       Date:  2007-08-13       Impact factor: 2.537

5.  Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.

Authors:  Anne L Ersig; Allison Werner-Lin; Lindsey Hoskins; Jennifer Young; Jennifer T Loud; June Peters; Mark H Greene
Journal:  J Fam Nurs       Date:  2018-12-12       Impact factor: 3.818

6.  Predicting adaptation to presymptomatic DNA testing for late onset disorders: who will experience distress? Rotterdam Leiden Genetics Workgroup.

Authors:  A C DudokdeWit; A Tibben; H J Duivenvoorden; M F Niermeijer; J Passchier
Journal:  J Med Genet       Date:  1998-09       Impact factor: 6.318

7.  "In sickness and in health"? Disclosures of genetic risks in dating.

Authors:  Robert L Klitzman; Meghan M Sweeney
Journal:  J Genet Couns       Date:  2010-10-02       Impact factor: 2.537

8.  Genetic Testing Considerations in Breast Cancer Patients.

Authors:  L France; J Gray; G Elwyn; M Tischkowitz; K Brain; J Sampson; C Anglim; A Clarke; E Parsons; H Sweetland; R Mansel; P Barrett-Lee; P Harper
Journal:  J Genet Couns       Date:  1999-10       Impact factor: 2.537

9.  Withdrawal from genetic counselling for cancer.

Authors:  Eveline Bleiker; Gea Wigbout; Anja van Rens; Senno Verhoef; Laura Van't Veer; Neil Aaronson
Journal:  Hered Cancer Clin Pract       Date:  2005-02-15       Impact factor: 2.857

10.  Colorectal cancer in the family: psychosocial distress and social issues in the years following genetic counselling.

Authors:  Eveline M A Bleiker; Fred H Menko; Irma Kluijt; Babs G Taal; Miranda A Gerritsma; Lidwina D V Wever; Neil K Aaronson
Journal:  Hered Cancer Clin Pract       Date:  2007-06-15       Impact factor: 2.857

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