• NIH Sep 1, 2020 | K01

    Evaluating the Risks and Benefits of the Next Generation of Direct-to-Consumer Genetic Tests

    Principal Investigator(s): KILBRIDE, MADISON K;

    Institution: University of Utah

    FOA Number: PA-21-268

    Abstract

    PROJECT NARRATIVE The proposed K01 Award?'Evaluating the Risks and Benefits of the Next Generation of Direct-to-Consumer Genetic Tests??will enable the candidate to acquire the academic background, research experience, and professional skills to become an independent ELSI investigator exploring the risks and benefits of current and emerging direct-to-consumer (DTC) genetic tests. The proposed research will fill a significant gap in the existing literature by evaluating the outcomes and risks and benefits of DTC genetic tests that include genes that are associated with a significantly increased risk of developing serious health conditions, such as cancer and cardiac disease. To accomplish this, the candidate and her team will assess the feasibility of and optimize a novel approach to studying DTC outcomes?the DTC Outcomes Evaluation Paradigm?that, unlike previous related research, does not depend on partnering with a DTC company and can be used to study a wide range of current and future DTC tests and companies.

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    K01

    Project Number:
    K01HG010903

    Start Date:
    Sep 1, 2020

    End Date:
    Aug 31, 2024

    PROJECT TERMS:

    Address, adverse outcome, Affective, base, Behavioral, Benefits and Risks, BRCA1 gene, career, Clinical, Cognitive, Color, cost, Coupled, Data, Data Collection, Development, Disclosure, Disease, Disease susceptibility, disorder risk, Distress, DNA sequencing, ethical legal social implication, Ethics, Evaluation, evidence base, experience, Future, gene panel, General Population, Generations, Genes, Genetic, Genetic Diseases, genetic information, genetic testing, Genomics, Goals, Growth, Health, Health behavior, Heart Diseases, Human Genetics, Individual, Informal Social Control, insight, instrument, interest, Intervention, Interview, Knowledge, Laws, Life, Literature, malignant breast neoplasm, Malignant neoplasm of ovary, Malignant Neoplasms, Measures, Medical, Mentored Research Scientist Development Award, Mentors, Methods, multidisciplinary, Mutation, next generation, novel, novel strategies, Oncogenes, Outcome, Outcome Study, Participant, Penetrance, Policies, Policy Maker, primary outcome, Procedures, Process, programs, psychosocial, Publishing, Qualitative Research, Recommendation, recruit, Research, Research Methodology, Research Personnel, Risk, Risk Estimate, Savings, Scholarship, skills, Structure, success, Surveys, Susceptibility Gene, Technology, Test Result, Testing, theories, Training, Uncertainty

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