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abstract
BACKGROUND
During
the process of tumor profiling, there is the potential to detect
germline variants. To the authors' knowledge, there currently is no
accepted standard of care for how to deal with these incidental
findings. The goal of the current study was to assess disclosure
preferences among patients with cancer regarding incidental genomic
variants that may be discovered during tumor profiling.
METHODS
A
45-item questionnaire was administered to 413 patients in ambulatory
oncology clinics. The survey captured demographic and disease variables
and personal and family history, and presented case scenarios for
different types of incidental germline variants that could theoretically
be detected during genomic analysis of a patient's tumor.
RESULTS
The
possibility of discovering non-cancer-related, germline variants did
not deter patients from tumor profiling: 77% wanted to be informed
concerning variants that could increase their risk of a serious but
preventable illness, 56% wanted to know about variants that cause a
serious but unpreventable illness, and 49% wanted to know about variants
of uncertain significance. The majority of patients (75%) indicated
they would share hereditary information regarding predisposition to
preventable diseases with family and 62% would share information
concerning unpreventable diseases. The most frequent concerns about
incidental findings were ability to obtain health (48%) or life (41%)
insurance. Only 21% of patients were concerned about privacy of
information.
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