• NIH Mar 1, 2018 | R01

    Regulation of International Direct-to-Participant Genomic Research

    Principal Investigator(s): KNOPPERS, BARTHA MARIA M., ROTHSTEIN, MARK A (contact);

    Institution: University of Louisville

    FOA Number: PA-14-276

    Abstract

    PROJECT NARRATIVE Researchers are now able to use the internet to recruit and enroll widely dispersed individuals, which is valuable for a wide range of research, especially research involving rare genetic disorders. With IRB approval, online recruitment and enrollment of individuals from the same country as the researchers is permissible, including obtaining biological specimens and health information, but it is unknown whether recruitment and enrollment of individuals from foreign countries would violate the laws of those countries. In collaboration with American stakeholders and legal experts from 32 countries, the investigators will analyze applicable legal provisions and provide policy options to enable ethical, international, direct-to-participant research.

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    R01

    Project Number:
    R01HG009914

    Start Date:
    Mar 1, 2018

    End Date:
    Jan 31, 2021

    PROJECT TERMS:

    American, biobank, Biological, Blood specimen, Collaborations, Complex, Consent, Consult, Country, Electronic Health Record, Enrollment, Ethical Issues, Ethics, Feedback, Genomics, Health, Hospitals, Individual, Institutional Review Boards, International, Internet, Laws, Legal, member, Participant, Physicians, Policies, Process, Publishing, Questionnaires, rare genetic disorder, recruit, Regulation, Research, Research Ethics, Research Personnel, response, Saliva, Sampling, Ships, Specimen, Techniques, welfare, working group, Writing

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