Factors Associated with Interest in Gene-Panel Testing and Risk Communication Preferences in Women from BRCA1/2 Negative Families
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.
KeywordsGene-panel Genetic testing BRCA1/2 negative Hereditary breast cancer Informed decision-making
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.
Compliance with Ethical Standards
Conflict of Interest
Authors Kristina Flores, Laurie Steffen, Christopher McLouth, Belinda Vicuna, Amanda Gammon, Lucretia Vigil, Zoneddy Dayao, Melanie Royce, and Anita Kinney have no conflict of interest.
Wendy Kohlmann received compensation within the past three years for consultation to Myriad Genetics.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of University of Utah on human experimentation and with the 1964 Helsinki declaration and it later amendments or comparable ethical standards. Informed consent was obtained from all participants included in the study.
No animal studies were carried out by the authors for this article.
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