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High-Risk Palliative Care Patients’ Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

Even at the end of life, testing cancer patients for inherited susceptibility may provide life-saving information to their relatives. Prior research suggests palliative care inpatients have suboptimal understanding of genetic importance, and testing may be underutilized in this clinical setting. These conclusions are based on limited research. This study aimed to estimate genetic testing prevalence among high-risk palliative care patients in a National Cancer Institute-designated comprehensive cancer center. We also aimed to understand these patients’ understanding of, and attitudes toward, hereditary cancer testing and DNA banking. Palliative care in-patients with cancer completed structured interviews, and their medical records were reviewed. Among patients at high risk for hereditary cancer, we assessed history of genetic testing/DNA banking; and related knowledge and attitudes. Among 24 high-risk patients, 14 (58.3%) said they/their relatives had genetic testing or they had been referred for a genetics consultation. Of the remaining 10 patients, seven (70%) said they would “probably” or “definitely” get tested. Patients who had not had testing were least concerned about the impact of future testing on their family relationships; two (20%) said they were “extremely concerned” about privacy related to genetic testing. Of patients without prior testing, five (50%) said they had heard or read “a fair amount” about genetic testing. No high-risk patients had banked DNA. Overall, 23 (95.8%) said they had heard or read “almost nothing” or “relatively little” about DNA banking. Written materials and clinician discussion were most preferred ways to learn about genetic testing and DNA banking. Overall, this study demonstrates underutilization of genetics services at the end of life continues to be problematic, despite high patient interest.

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Funding

This study was funded by the Maryland Cigarette Fund Restitution, administered by the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University.

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Authors and Affiliations

  1. Human & Molecular Genetics, Virginia Commonwealth University, 1101 E. Marshall St, Richmond, VA, 23298-0033, USA

    John M. Quillin

  2. McKusick-Nathans Institute of Genetics Medicine, Johns Hopkins University, Baltimore, MD, USA

    Oluwabunmi Emidio & Joann N. Bodurtha

  3. Johns Hopkins University, Baltimore, MD, USA

    Brittany Ma, Lauryn Bailey, In Guk Kang & Oluwafemi Patrick Owodunni

  4. Palliative Medicine, Johns Hopkins University, Baltimore, MD, USA

    Thomas J. Smith & Rab Razzak

  5. Chemical and Biomolecular Engineering, Johns Hopkins University, Baltimore, MD, USA

    Brandon J. Yu

  6. Division of General Internal Medicine, Johns Hopkins University, Baltimore, MD, USA

    Mohammed Abusamaan

Authors
  1. John M. Quillin
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  2. Oluwabunmi Emidio
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  3. Brittany Ma
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  4. Lauryn Bailey
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  5. Thomas J. Smith
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  6. In Guk Kang
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  7. Brandon J. Yu
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  8. Oluwafemi Patrick Owodunni
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  9. Mohammed Abusamaan
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  10. Rab Razzak
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  11. Joann N. Bodurtha
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Correspondence to John M. Quillin.

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Conflicts of Interest

John M. Quillin, Oluwabunmi Emidio, Brittany Ma, Lauryn Bailey, Thomas J. Smith, In Guk Kang, Brandon J. Yu, Oluwafemi Patrick Owodunni, Mohammed Abusamaan, Rab Razzak, and Joann N. Bodurtha declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards for human experimentation of the institutional review board at Johns Hopkins University, with national standards, and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients being included in the study.

Animal Studies

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

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Quillin, J.M., Emidio, O., Ma, B. et al. High-Risk Palliative Care Patients’ Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking. J Genet Counsel 27, 834–843 (2018). https://doi.org/10.1007/s10897-017-0181-9

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  • DOI: https://doi.org/10.1007/s10897-017-0181-9

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