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  • Research Tool

    Utah Genome Project - Informed Consent Form

    This consent form was used for the Utah Genome Project. The form describes the specific protected health information that would be collected for the study, how the information would be used, and how…

  • Publication

    Reproductive health and human rights: Integrating medicine, ethics, and law

    Clarendon Press
    Cook, Rebecca J., Dickens, Bernard M., Fathalla, Mahmoud F.
    Digital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…

  • Grant Abstract

    A Community-Based Approach to Overcoming Barriers to Cascade Screening for Long QT Syndrome

    While the value of identifying individuals in the population who carry `actionable' variants and screening their relatives (i.e. cascade screening) is widely acknowledged, there are numerous…
    • actionable mutation
    • Address
    • Adrenergic beta-Antagonists
    • American
    • Amish

  • Publication

    Ethics in studies on children and environmental health

    Journal of Medical Ethics
    Merlo, D.F., Knudsen, L.E., Matusiewicz, K., Niebrój, L., Vähäkangas, K.H.
    Digital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…

  • Publication

    Health and human rights: Basic international documents

    Harvard University Press
    Marks, Stephen P.
    Digital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…

  • Publication

    Manual for research ethics committees

    Cambridge University Press
    Eckstein, Sue, Centre of Medical Law and Ethics, King's College, London
    Digital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…

  • Publication

    The ethics of biomedical research: An international perspective

    Oxford University Press
    Brody, Baruch A.
    Digital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…

  • Publication

    Ethical issues in clinical practice: Cases and analyses

    Seminars in Pediatric Neurology
    Antommaria, Armand H. Matheny, Bale, James F.
    Digital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…

  • Grant Abstract

    Cost-effectiveness of Whole Genome Sequencing of Healthy Adults

    PROJECT NARRATIVE The central goal of the proposed research is to determine the cost-effectiveness of integrating whole genome sequencing into the care of healthy adults. We will assess the health…
    • Address
    • Adult
    • Area
    • base
    • behavioral response

  • Grant Abstract

    Developing and Evaluating Patient Centered Tools for Clinical Classification of Variants of Uncertain Significance

    Targeted gene sequencing using large panels has become an increasingly important strategy for evaluating disease risk for many inherited diseases. Expanded gene panels are more sensitive than single…
    • Arrhythmia
    • base
    • Benign
    • Cardiomyopathies
    • Characteristics