Journal of Genetic Counseling

, Volume 21, Issue 4, pp 547–556

Bias in the Reporting of Family History: Implications for Clinical Care

  • Elissa M. Ozanne
  • Adrienne O’Connell
  • Colleen Bouzan
  • Phil Bosinoff
  • Taryn Rourke
  • Dana Dowd
  • Brian Drohan
  • Fred Millham
  • Pat Griffin
  • Elkan F. Halpern
  • Alan Semine
  • Kevin S. Hughes
Original Research

DOI: 10.1007/s10897-011-9470-x

Cite this article as:
Ozanne, E.M., O’Connell, A., Bouzan, C. et al. J Genet Counsel (2012) 21: 547. doi:10.1007/s10897-011-9470-x

Abstract

Family history of cancer is critical for identifying and managing patients at risk for cancer. However, the quality of family history data is dependent on the accuracy of patient self reporting. Therefore, the validity of family history reporting is crucial to the quality of clinical care. A retrospective review of family history data collected at a community hospital between 2005 and 2009 was performed in 43,257 women presenting for screening mammography. Reported numbers of breast, colon, prostate, lung, and ovarian cancer were compared in maternal relatives vs. paternal relatives and in first vs. second degree relatives. Significant reporting differences were found between maternal and paternal family history of cancer, in addition to degree of relative. The number of paternal family histories of cancer was significantly lower than that of maternal family histories of cancer. Similarly, the percentage of grandparents’ family histories of cancer was significantly lower than the percentage of parents’ family histories of cancer. This trend was found in all cancers except prostate cancer. Self-reported family history in the community setting is often influenced by both bloodline of the cancer history and the degree of relative affected. This is evident by the underreporting of paternal family histories of cancer, and also, though to a lesser extent, by degree. These discrepancies in reporting family history of cancer imply we need to take more care in collecting accurate family histories and also in the clinical management of individuals in relation to hereditary risk.

Keywords

CancerFamily historySelf-reportingData collection

Copyright information

© National Society of Genetic Counselors, Inc. 2012

Authors and Affiliations

  • Elissa M. Ozanne
    • 1
  • Adrienne O’Connell
    • 2
  • Colleen Bouzan
    • 3
  • Phil Bosinoff
    • 4
  • Taryn Rourke
    • 5
  • Dana Dowd
    • 5
  • Brian Drohan
    • 4
  • Fred Millham
    • 5
  • Pat Griffin
    • 2
  • Elkan F. Halpern
    • 6
  • Alan Semine
    • 5
  • Kevin S. Hughes
    • 7
    • 8
  1. 1.Institute for Health Policy Studies, Department of SurgeryUniversity of CaliforniaSan FranciscoUSA
  2. 2.Massachusetts General HospitalBostonUSA
  3. 3.Institute for Technology AssessmentMassachusetts General HospitalBostonUSA
  4. 4.Avon Breast Evaluation CenterMassachusetts General HospitalBostonUSA
  5. 5.Newton-Wellesley HospitalNewtonUSA
  6. 6.Institute for Technology Assessment, Massachusetts General HospitalHarvard Medical SchoolBostonUSA
  7. 7.Avon Breast Evaluation Center and Department of Surgery, Massachusetts General Hospital, Newton-Wellesley HospitalHarvard Medical SchoolBostonUSA
  8. 8.Massachusetts General HospitalDivision of Surgical OncologyBostonUSA