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Sharing BRCA1/2 Test Results With First-Degree Relatives: Factors Predicting Who Women Tell

From the Dana-Farber Cancer Institute; Departments of Psychiatry and Medicine, Harvard Medical School, Boston MA; and Faculty of Pharmacy, Universite Laval, Québec, Canada.

Address reprint requests to Andrea Farkas Patenaude, PhD, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115; e-mail: andrea_patenaude{at}dfci.harvard.edu

PURPOSE: Patient communication with relatives about cancer genetic test results is the primary means for alerting those who may benefit from identification of hereditary risk. This study identifies factors predicting patterns of disclosure of BRCA1/2 test results to first-degree relatives (FDRs) among women tested in a clinical protocol.

PATIENTS AND METHODS: A total of 273 women completed a family communication measure 4 months after BRCA1/2 result disclosure. ² analyses and logistic regression models identified factors predicting sharing of the test result.

RESULTS: Most FDRs were informed of the participant's test result by 4 months; female relatives were more likely to be informed than males. Tested women conveyed inconclusive results (variant or negative without known familial mutation) less frequently to their sisters than conclusive (positive/true negative) results (P = .03). Twenty-three percent of participants did not inform their father. Informing brothers was more likely when BRCA1/2 was inherited through paternal lineage (P = .04), but 29% of brothers were not informed. Women older than age 40 were less likely to share their result with their parents (P = .03) than were women 40. Children's ages influenced communication to offspring; most children were told.

CONCLUSION: Demographic, health-, and test-related factors predicted genetic test result communication to FDRs. Additional research investigating the full spectrum of discussion within families and motives for incomplete sharing of genetic test results with relatives may suggest strategies for providers and targeted educational interventions for patients to enhance family communication.

Supported by Grant No. 5RO1HG01244 from the Ethical, Legal, and Social Implications (ELSI) branch of the National Human Genome Research Institute, National Institutes of Health. M.D. currently holds a "Chercheur-boursier" award from the Fonds de la Recherche en Santé du Québec and is supported by the INHERIT BRCAs research program funded by the Canadian Institutes of Health Research.

A.F.P. and M.D. contributed equally to this work.

Presented in part in a poster at the Annual Meeting of the American Society of Clinical Oncology, New Orleans, LA, June 5-8, 2004.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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