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Journal of Genetic Counseling

, Volume 25, Issue 2, pp 258–269 | Cite as

Breast Cancer Risk Perceptions among Relatives of Women with Uninformative Negative BRCA1/2 Test Results: The Moderating Effect of the Amount of Shared Information

  • Deborah O. HimesEmail author
  • Margaret F. Clayton
  • Gary W. Donaldson
  • Lee Ellington
  • Saundra S. Buys
  • Anita Y. Kinney
Original Research

Abstract

The most common result of BRCA1/2 mutation testing when performed in a family without a previously identified mutation is an uninformative negative test result. Women in these families may have an increased risk for breast cancer because of mutations in non-BRCA breast cancer predisposition genes, including moderate- or low-risk genes, or shared environmental factors. Genetic counselors often encourage counselees to share information with family members, however it is unclear how much information counselees share and the impact that shared information may have on accuracy of risk perception in family members. We evaluated 85 sisters and daughters of women who received uninformative negative BRCA1/2 results. We measured accuracy of risk perception using a latent variable model where accuracy was represented as the correlation between perceived risk (indicators = verbal and quantitative measures) and calculated risk (indicators = Claus and BRCAPRO). Participants who reported more information was shared with them by their sister or mother about her genetic counseling session had greater accuracy of risk perception (0.707, p = 0.000) than those who reported little information was shared (0.326, p = 0.003). However, counselees shared very little information; nearly 20 % of family members reported their sister or mother shared nothing with them about her genetic counseling. Family members were generally not aware of the existence of a genetic counseling summary letter. Our findings underscore the need for effective strategies that facilitate counselees to share information about their genetic counseling sessions. Such communication may help their relatives better understand their cancer risks and enhance risk appropriate cancer prevention.

Keywords

Breast cancer Genetic counseling Uninformative negative BRCA1/2 Accuracy of risk perception Risk assessment Summary letter Family communication Claus BRCAPRO Gail Numeracy Cancer related distress 

Notes

Acknowledgement

Thanks to Amanda Gammon, MS CGC, Genetic Counselor, Huntsman Cancer Institute.

This study was funded by the Dr. Elaine D. Dyer Research Endowment Award as well as a grant from the Brigham Young University Research and Scholarship Council. Previous research with first-degree relatives of current participants was supported by grants from the National Cancer Institute at the National Institutes of Health (1R01CA129142 to AYK and U01 CA152958, K05 CA096940, and U01 CA183081) and the Huntsman Cancer Foundation. 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).

Conflict of Interest

Authors Deborah O. Himes, Margaret F. Clayton, Gary Donaldson, Lee Ellington, Saundra Buys and Anita Y. Kinney declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

Supplementary material

10897_2015_9866_MOESM1_ESM.docx (68 kb)
Supplemental Figure 1 (DOCX 67 kb)

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Copyright information

© National Society of Genetic Counselors, Inc. 2015

Authors and Affiliations

  • Deborah O. Himes
    • 1
    Email author
  • Margaret F. Clayton
    • 2
  • Gary W. Donaldson
    • 2
    • 3
  • Lee Ellington
    • 2
    • 3
  • Saundra S. Buys
    • 4
  • Anita Y. Kinney
    • 5
    • 6
  1. 1.College of NursingBrigham Young UniversityProvoUSA
  2. 2.College of NursingUniversity of UtahSalt Lake CityUSA
  3. 3.Department of Internal Medicine, School of MedicineUniversity of UtahSalt Lake CityUSA
  4. 4.Department of MedicineHuntsman Cancer InstituteSalt Lake CityUSA
  5. 5.Division of Epidemiology, Biostatistics and Prevention, Department of Internal MedicineUniversity of New MexicoAlbuquerqueUSA
  6. 6.University of New Mexico Cancer CenterAlbuquerqueUSA

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