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. Author manuscript; available in PMC: 2017 Mar 7.
Published in final edited form as: Genet Med. 2016 Aug 25;19(3):337–344. doi: 10.1038/gim.2016.110

Table 2.

Evidence-based criteria for a genomic secondary results preferences instrument

Criterion Rationale
Preferences should be elicited
through structured choices rather
than open-ended questions
Patients prefer for preferences to be prospectively
applied during the computer-based analysis of
genomic raw data. They do not want providers to
receive results that will not be reported to the
patient.
Preference items should be
organized around specific diseases
or disease categories
Patient preferences often seem to be driven by
personal experience with a disease in a family
member or other loved one.
Preference items should be
immediately understandable by
most patients
Genomic testing will increasingly be delivered
without the benefit of genetic counseling, including in
the PREDICT program at Vanderbilt University.
Preferences items should be limited
in number
In many clinical and research settings, including the
projects described here, a brief instrument is
desirable to minimize respondent burden and
support efficient clinical flow.
Preference items should be carefully
selected to support inference about
patients’ other preferences
Genomic sequencing creates the potential to
generate a wide range of secondary results.