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High-Risk Palliative Care Patients’ Knowledge and Attitudes about Hereditary Cancer Testing and DNA Banking
ven 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 Bprobably^ or Bdefinitely^ 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 Bextremely concerned^ about privacy related to genetic testing. Of patients without prior testing, five (50%) said they had
heard or read Ba fair amount^ about genetic testing. No high-risk patients had banked DNA. Overall, 23 (95.8%) said they had
heard or read Balmost nothing^ or Brelatively 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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