The PrU: Development and validation of a measure to assess personal utility of genomic results

Purpose: People report experiencing value from learning genomic results even in the absence of clinically actionable information. Such personal utility has emerged as a key concept in genomic medicine. The lack of a validated patient-reported outcome measure of personal utility has impeded the ability to assess this concept among those receiving genomic results and evaluate the patient-perceived value of genomics. We aimed to construct and psychometrically evaluate a scale to measure personal utility of genomic results-the Personal Utility (PrU) scale. Methods: We used an evidence-based, operational definition of personal utility, with data from a systematic literature review and Delphi survey to build a novel scale. After piloting with 24 adults, the PrU was administered to healthy adults in a Clinical Sequencing Evidence -Generating Research Consortium study after receiving results. We investigated the responses using exploratory factor analysis. Results: The exploratory factor analysis (N = 841 participants) resulted in a 3-factor solution, accounting for 74% of the variance in items: (1) self-knowledge (alpha = 0.92), (2) reproductive planning (alpha = 0.89), and (3) practical benefits (alpha = 0.91). Conclusion: Our findings support the use of the 3-factor PrU to assess personal utility of genomic results. Validation of the PrU in other samples will be important for more wide-spread application. (c) 2022 by American College of Medical Genetics and Genomics. Published by Elsevier Inc.