Factors Associated with Interest in Gene-Panel Testing and Risk Communication Preferences in Women from BRCA1/2 Negative Families

Kristina G. Flores, Laurie E. Steffen, Christopher J. McLouth, Belinda E. Vicuña, Amanda Gammon, Wendy Kohlmann, Lucretia Vigil, Zoneddy R. Dayao, Melanie E. Royce, Anita Y. Kinney

Research output: Contribution to journalArticlepeer-review

12 Scopus citations

Abstract

Scientific advances have allowed the development of multiplex gene-panels to assess many genes simultaneously in women who have tested negative for BRCA1/2. We examined correlates of interest in testing for genes that confer modest and moderate breast cancer risk and risk communication preferences for women from BRCA negative families. Female first-degree relatives of breast cancer patients who tested negative for BRCA1/2 mutations (N = 149) completed a survey assessing multiplex genetic testing interest and risk communication preferences. Interest in testing was high (70 %) and even higher if results could guide risk-reducing behavior changes such as taking medications (79 %). Participants preferred to receive genomic risk communications from a variety of sources including: primary care physicians (83 %), genetic counselors (78 %), printed materials (71 %) and the web (60 %). Factors that were independently associated with testing interest were: perceived lifetime risk of developing cancer (odds ratio (OR) = 1.67: 95 % confidence interval (CI) 1.06–2.65) and high cancer worry (OR = 3.12: CI 1.28–7.60). Findings suggest that women from BRCA1/2 negative families are a unique population and may be primed for behavior change. Findings also provide guidance for clinicians who can help develop genomic risk communications, promote informed decision making and customize behavioral interventions.

Original languageEnglish
Pages (from-to)480-490
Number of pages11
JournalJournal of Genetic Counseling
Volume26
Issue number3
DOIs
StatePublished - Jun 1 2017

Bibliographical note

Publisher Copyright:
© 2016, National Society of Genetic Counselors, Inc.

Funding

We would like to thank the REACH Project participants and their relatives, who made this research possible. This work was supported by grants from the National Cancer Institute at the National Institutes of Health (1R01CA129142 to AYK and U01 CA152958) and the UNM Comprehensive Cancer Center P30 (P30CA118100). The project was also supported by the Shared Resources (P30 CA042014) at Huntsman Cancer Institute (Biostatistics and Research Design, Genetic Counseling, Research Informatics, and the Utah Population Database [UPDB]); the Utah Cancer Registry, which is funded by Contract No.HHSN261201000026C from the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) Program with additional support from the Utah State Department of Health and the University of Utah; the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant 8UL1TR000105 (formerly UL1RR025764). This content is solely the responsibility of the authors and does not necessarily reflect the opinions or views of the funding and supporting agencies.

FundersFunder number
National Cancer Institute's Surveillance Epidemiology and End Results
SEER
UPDB
Utah Cancer Registry
National Institutes of Health (NIH)U01 CA152958
National Childhood Cancer Registry – National Cancer InstituteR01CA129142, P30CA118100
National Center for Research Resources
National Center for Advancing Translational Sciences (NCATS)8UL1TR000105, UL1RR025764
Utah Department of Health
University of Utah Health
Huntsman Cancer Institute
University of Michigan Comprehensive Cancer CenterP30 CA042014

    Keywords

    • BRCA1/2 negative
    • Gene-panel
    • Genetic testing
    • Hereditary breast cancer
    • Informed decision-making

    ASJC Scopus subject areas

    • Genetics(clinical)

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