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

  • Original Research
  • Published:
Journal of Genetic Counseling

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.

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Acknowledgements

Supported by Philanthropic Funds from the MGH and the Sandra Perrin Fund for Women’s Imaging Education at Newton Wellesley Hospital. E. Ozanne’s work on this project was supported in part by grant number MRSG112037 from the American Cancer Society

Disclosures

Dr. Hughes is a co-developer of HughesRiskApps, a software package to help identify and manage women at high risk of hereditary disease. This software is currently not a commercial product and Dr. Hughes derives no financial benefit from its use. There is a potential of this product becoming commercial in the future.

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Authors and Affiliations

  1. Institute for Health Policy Studies, Department of Surgery, University of California, San Francisco, CA, USA

    Elissa M. Ozanne

  2. Massachusetts General Hospital, Boston, MA, USA

    Adrienne O’Connell & Pat Griffin

  3. Institute for Technology Assessment, Massachusetts General Hospital, Boston, MA, USA

    Colleen Bouzan

  4. Avon Breast Evaluation Center, Massachusetts General Hospital, Boston, MA, USA

    Phil Bosinoff & Brian Drohan

  5. Newton-Wellesley Hospital, Newton, MA, USA

    Taryn Rourke, Dana Dowd, Fred Millham & Alan Semine

  6. Institute for Technology Assessment, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Elkan F. Halpern

  7. Avon Breast Evaluation Center and Department of Surgery, Massachusetts General Hospital, Newton-Wellesley Hospital, Harvard Medical School, Boston, MA, USA

    Kevin S. Hughes

  8. Massachusetts General Hospital, Division of Surgical Oncology, 55 Fruit Street, YAW 7, Boston, MA, 02114, USA

    Kevin S. Hughes

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  1. Elissa M. Ozanne
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  2. Adrienne O’Connell
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  3. Colleen Bouzan
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  4. Phil Bosinoff
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  5. Taryn Rourke
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  6. Dana Dowd
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  7. Brian Drohan
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  8. Fred Millham
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  9. Pat Griffin
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  10. Elkan F. Halpern
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  11. Alan Semine
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  12. Kevin S. Hughes
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Correspondence to Kevin S. Hughes.

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Ozanne, E.M., O’Connell, A., Bouzan, C. et al. Bias in the Reporting of Family History: Implications for Clinical Care. J Genet Counsel 21, 547–556 (2012). https://doi.org/10.1007/s10897-011-9470-x

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  • DOI: https://doi.org/10.1007/s10897-011-9470-x

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