Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results.

ABSTRACT:

Purpose

Eliciting and understanding patient and research participant preferences regarding return of secondary test results are key aspects of genomic medicine. A valid instrument should be easily understood without extensive pretest counseling while still faithfully eliciting patients' preferences.

Methods

We conducted focus groups with 110 adults to understand patient perspectives on secondary genomic findings and the role that preferences should play. We then developed and refined a draft instrument and used it to elicit preferences from parents participating in a genomic sequencing study in children with intellectual disabilities.

Results

Patients preferred filtering of secondary genomic results to avoid information overload and to avoid learning what the future h

SUBMITTER: Brothers KB 

PROVIDER: S-EPMC5326612 | biostudies-literature | 2017 Mar

REPOSITORIES: biostudies-literature