• NIH Dec 17, 2020 | K99

    An ELSI-Integrated Evaluation of the Family-Level Utility of Pediatric Genomic Sequencing

    Principal Investigator(s): SMITH, HADLEY STEVENS;

    Institution: Baylor College of Medicine

    FOA Number: PA-19-130

    Abstract

    PROJECT NARRATIVE The goal of the proposed research is to investigate how clinical genomic sequencing impacts families of pediatric patients. This research will develop an empirically informed framework of normative values important to families of pediatric patients, including ethical, legal, and social implications (ELSI), which will then be used to elicit preferences for features of sequencing from a nationally representative sample of parents in the US. The results of this work will lead to a measure of family utility that integrates ELSI and can be used in a decision analytic model to assess the impact of genomic sequencing and the importance of including family- level ELSI considerations in such analyses.

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    K99

    Project Number:
    K99HG011491

    Start Date:
    Dec 17, 2020

    End Date:
    Dec 31, 2022

    PROJECT TERMS:

    Affect, American, Area, Award, base, Biological, career, career development, Child, Childhood, Clinic, Clinical, clinical care, clinical implementation, clinically relevant, college, Communication, comparative effectiveness, comparative effectiveness analysis, Country, Data, Decision Making, Development Plans, Diagnostic, economic evaluation, Effectiveness, effectiveness evaluation, ethical legal social implication, Ethical Theory, Ethics, Evaluation, evidence base, exome sequencing, experimental study, Family, Family member, Family Study, follow-up, Genetic, Genetic Diseases, Genetic Screening, Genomic medicine, Genomics, Goals, Guidelines, Health, health economics, Health Policy, improved, Individual, individual patient, innovation, insurance coverage, Interview, Measurement, Measures, Medical center, medical ethics, Medical Genetics, medical schools, Medicine, Mentors, Mentorship, Methodology, Methods, Modeling, models and simulation, Nature, Outcome Assessment, Outcome Measure, Outcomes Research, Parents, Pathway interactions, patient population, Patient Preferences, Patients, pediatric patients, Pediatrics, Phase, Physicians, Policies, population health, preference, Process, professor, programs, Qualitative Research, Recommendation, Research, research clinical testing, Research Methodology, Research Personnel, Research Project Grants, Resources, Sampling, Science, screening guidelines, skills, Structural Models, Structure, tenure track, Testing, tool, Training, uptake, Weight, Work

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