Heterogeneity of preferences for and outcomes of pediatric genomic sequencing by race and ethnicity

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Project Summary/Abstract This supplement extends the parent grant, An ELSI-Integrated Evaluation of the Family-Level Utility of Pediatric Genomic Sequencing (R00HG011491), to explicitly and meaningfully consider race and ethnicity in the modeling of choice data collected in Aim 2 and selection of parameter values to populate the decision model in Aim 3. It also supports training and mentorship of the candidate, Taylor Montgomery, with skills to pursue a career researching the impact of genomic medicine on population health. The overall goal of the proposed research is to understand whether and how preferences for, and outcomes of, clinical GS for newborn and pediatric patients differ by race and ethnicity. The research plan has two specific aims. First, we will evaluate heterogeneity of preferences for pediatric genomic sequencing by race and ethnicity, including examining methods for consideration of preference heterogeneity by race and ethnicity in published discrete choice experiments and examining whether and how preferences differ according to race and ethnicity using primary data collected through the discrete choice experiment in the parent grant. Second, we will examine whether and how clinical outcomes of genomic sequencing differ by race and ethnicity using a clinical database maintained at a large referral hospital. This research will have impact on the field of genomic medicine through informing ethical implementation of GS to improve population health. Additionally, Ms. Montgomery will obtain formal training and mentorship in literature review methods, quantitative methods in health economics and policy, and genomic medicine, as well as manuscript writing and oral and poster presentation skills. Upon completion of the proposed training and research plans, Ms. Montgomery will be well- positioned to begin a PhD program to pursue a career in public health and policy research in genomics.