• NIH Jun 1, 2021 | R01

    Framework for Advances in Reprogenomics Ethics & Regulation (FAIRER)

    Principal Investigator(s): FARRELL, RUTH , MICHIE, MARSHA MABRY (contact);

    Institution: CASE WESTERN RESERVE UNIVERSITY

    FOA Number: PA-17-444

    Abstract

    PROJECT NARRATIVE Research in reproductive genomics is shifting, from diagnostics to interventions in the human genome, epigenome, and microbiome. But we lack ethical guidance about how to conduct these human trials without causing undue harm, especially in regard to the women participants who are a necessary part of such trials. By building an ethical framework and a toolkit to guide researchers and institutional review boards, this project will create robust guidance for research in reprogenomics and a broadened consensus on these technologies among key professional bodies.

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    R01

    Project Number:
    R01HG011480

    Start Date:
    Jun 1, 2021

    End Date:
    Mar 31, 2024

    PROJECT TERMS:

    Address, Advocate, Area, Attention, Bioethics Consultants, Birth, Child, Child Health, Childhood, Clinical, Clinical Pharmacology, clinical practice, Clinical Research, Clinical Trials, Clustered Regularly Interspaced Short Palindromic Repeats, Consensus, Data, design, Diagnosis, Diagnostic, Diagnostic tests, Discipline of obstetrics, Educational Materials, Embryo, Environment, epigenome, epigenomics, Equilibrium, ethical legal social implication, Ethics, Family, Family member, fetal, Focus Groups, Future Generations, Gene-Modified, Generations, Genetic, Genetic Screening, Genome, genome editing, genome sciences, Genomics, Guidelines, Human, Human Genome, Human Subject Research, improved, improved outcome, Individual, Infant, Inherited, innovation, Institution, Institutional Review Boards, Intention, interest, Intervention, Interview, Medical, meetings, member, microbiome, Modification, Mothers, Nature, Neonatal, obstetrical complication, Outcome, Participant, Pathway interactions, Patients, Pharmacology, Policy Maker, Positioning Attribute, Pregnancy, pregnant, Pregnant Women, Premature Labor, prevent, Process, Professional Organizations, Protocols documentation, Recommendation, Regulation, reproductive, reproductive medicine, Reproductive Sciences, Research, Research Ethics, Research Methodology, Research Personnel, Review Literature, Risk, Role, screening, social, Societies, Structure, symposium, systematic review, Technology, teration, Testing, Therapeutic, Woman, Women's Health, Work

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