• NIH Sep 20, 2018 | R01

    Health care system-led familial risk notification: design and ethical assessment

    Principal Investigator(s): HENRIKSON, NORA B;

    Institution: KAISER FOUNDATION RESEARCH INSTITUTE

    FOA Number: PA-17-444

    Abstract

    PROJECT NARRATIVE Health systems could work with genetic patients by directly notifying relatives who receive care in the same health system, but no U.S.-based care models have emerged and many questions with ethical and social implications remain. We propose a human-centered design and feasibility study of health system-led familial outreach and risk notification. In the first aim, we will use qualitative design methods to assess user needs and requirements assessment activities with patients, their relatives, and clinical and health system stakeholders; in the second aim, we will test the outreach process in a prospective sample, assessing its feasibility and limited impact on genetic testing behavior.

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    R01

    Project Number:
    R01HG010144

    Start Date:
    Sep 20, 2018

    End Date:
    Jun 30, 2022

    PROJECT TERMS:

    actionable mutation, Address, base, behavior test, BRCA1 gene, care seeking, Caring, Clinical, clinical care, cognitive interview, Communication, comparison group, Computerized Medical Record, Consent, Data, design, Educational workshop, Ethicists, Ethics, Evaluation, Family, Family member, Feasibility Studies, follow-up, Foundations, Future, Generations, Genetic, Genetic Counseling, Genetic Services, genetic testing, Health system, Healthcare Systems, Hereditary Nonpolyposis Colorectal Neoplasms, Human, Institution, Integrated Health Care Systems, Interview, iterative design, Learning, Link, Logistics, Medical Genetics, member, Methods, Modeling, Mutation, Notification, Outcome, Outcome Assessment, outreach, Pathogenicity, Patients, Persons, preference, proband, Procedures, Process, prospective, Prospective cohort, Provider, Public Health, Randomized, Relative Risks, Risk, Sampling, satisfaction, Scholarship, Scientist, screening, social, social implication, Surveys, System, Techniques, Test Result, Testing, treatment as usual, United States, Variant, Washington

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