Journal of Genetic Counseling

, Volume 19, Issue 5, pp 497–525 | Cite as

Exploring Hereditary Cancer Among Dying Cancer Patients—A Cross-Sectional Study of Hereditary Risk and Perceived Awareness of DNA Testing and Banking

  • John Martin Quillin
  • Joann N. Bodurtha
  • Laura A. Siminoff
  • Thomas J. Smith
Original Research

Abstract

Hereditary cancer assessment at the end of life is a relatively unexplored area, but it could be critical for surviving family members. This study explored the prevalence of hereditary cancer among dying cancer patients and assessed patients’ perceived awareness of DNA testing and/or banking in a public access hospital. Palliative care patients with cancer from a single institution (or their medical-decision-making surrogates for patients unable to answer for themselves) completed structured interviews. Information was collected through medical records review and structured interviews for 43 dying cancer patients. Information for 9 patients was collected from surrogates. Nine patients (21%, 95% CI = 8.8% to 33.1%) had strong genetic risk. Currently available genetic tests could have addressed this risk for several patients. None had previous genetic counseling, testing or DNA banking. Among strong-risk patients, about half of patients/surrogates had heard/read “almost nothing” about genetic testing (44%) and DNA banking (67%). Perceived genetic awareness was not associated with genetic risk, and neither were sociodemographic characteristics. The proportion of hereditary cancer may be at least as high in the palliative care population as in other clinical settings, but awareness and uptake among patients are low. These conditions are not being recognized upstream and families are losing valuable information.

Keywords

Hereditary Neoplasm Cancer Genetic screening DNA banking End of life Genetic testing Genetic counseling 

Notes

Acknowledgments

Funding for this study was from the Massey Cancer Center at Virginia Commonwealth University. We would like to thank Ms. Funmi Obiri for recruitment and administrative assistance.

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Copyright information

© National Society of Genetic Counselors, Inc. 2010

Authors and Affiliations

  • John Martin Quillin
    • 1
  • Joann N. Bodurtha
    • 1
  • Laura A. Siminoff
    • 2
  • Thomas J. Smith
    • 3
  1. 1.Massey Cancer Center, Human & Molecular GeneticsVirginia Commonwealth UniversityRichmondUSA
  2. 2.Massey Cancer Center, Social & Behavioral HealthVirginia Commonwealth UniversityRichmondUSA
  3. 3.Massey Cancer Center, Internal MedicineVirginia Commonwealth UniversityRichmondUSA

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