Characteristics associated with genetic counseling referral and BRCA1/2 testing among women in a large integrated health system

• Type of Material: Article
• Authors: Cecelia A. Bellcross, Emory University; Lucy A. Peipins, Centers for Disease Control and Prevention; Frances A. McCarty, Centers for Disease Control and Prevention; Juan L. Rodriguez, Centers for Disease Control and Prevention; Nikki A. Hawkins, Centers for Disease Control and Prevention; Sharon Hensley Alford, Josephine Ford Cancer Center; Steven Leadbetter, Centers for Disease Control and Prevention
• Language: English
• Date: 2015-01-01
• Publisher: Springer Nature [academic journals on nature.com]: Hybrid Journals - choice of CC licence
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2015 American College of Medical Genetics and Genomics.
• Final Published Version (URL): http://dx.doi.org/10.1038/gim.2014.68
• Title of Journal or Parent Work: Genetics in Medicine
• ISSN: 1098-3600
• Volume: 17
• Issue: 1
• Start Page: 43
• End Page: 50
• Grant/Funding Information: Funding support was provided by the Centers for Disease Control and Prevention (contract 200-2002-00574, task order 0015).
• Keywords: genetic counseling; OVARIAN-CANCER; genetic testing; family history; Genetics & Heredity; KNOWLEDGE; HEREDITARY BREAST; Science & Technology; BRCA1 and BRCA2 genes; MUTATION CARRIERS; FAMILY-HISTORY; SERVICES-TASK-FORCE; hereditary breast and ovarian cancer syndrome; ATTITUDES; BREAST-CANCER RISK; RECOMMENDATION STATEMENT; Life Sciences & Biomedicine; PRIMARY-CARE
• Research Categories: Biology, Genetics; Health Sciences, Oncology

Abstract

Background:Evidence shows underutilization of cancer genetics services. To explore the reasons behind this underutilization, this study evaluated characteristics of women who were referred for genetic counseling and/or had undergone BRCA1/2 testing. Methods:An ovarian cancer risk perception study stratified 16,720 eligible women from the Henry Ford Health System into average-, elevated-, and high-risk groups based on family history. We randomly selected 3,307 subjects and interviewed 2,524 of them (76.3% response rate). Results:Among the average-, elevated-, and high-risk groups, 2.3, 10.1, and 20.2%, respectively, reported genetic counseling referrals, and 0.8, 3.3, and 9.5%, respectively, reported having undergone BRCA testing. Personal breast cancer history, high risk, and perceived ovarian cancer risk were associated with both referral and testing. Discussion of family history with a doctor predicted counseling referral, whereas belief that family history influenced risk was the strongest BRCA testing predictor. Women perceiving their cancer risk as much higher than other women their age were twice as likely (95% confidence interval: 2.0-9.6) to report genetic counseling referral. Conclusion:In a health system with ready access to cancer genetic counseling and BRCA testing, women who were at high risk underutilized these services. There were strong associations between perceived ovarian cancer risk and genetic counseling referral, and between a belief that family history influenced risk and BRCA testing.