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NIH May 1, 2019 | K01
Genetic data partnerships: Enabling equitable access within academic/private data sharing agreements
Institution: UNIVERSITY OF MICHIGAN AT ANN ARBOR
FOA Number: PA-18-369
Abstract
PROJECT NARRATIVE ?Precision medicine? and other advances in genetic research require access to massive amounts of genetic and related health data, but private genetic datasets are growing rapidly in both value and size and pose a challenge to the public genetic data market. This research proposes to characterize and evaluate the factors influencing these genetic data partnerships (beginning with academics), compare market drivers to current existing governance structures, and offer a model for best practices. Findings will inform current academic and governmental genetic data-sharing policy, as well as build a longitudinal analysis and conceptual model to stabilize this market moving forward.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
K01Project Number:
K01HG010496Start Date:
May 1, 2019End Date:
Feb 28, 2024PROJECT TERMS:
Agreement, Automobile Driving, base, career, career development, Clinical, clinical care, Communities, cost, court, Data, data access, Data Analyses, data repository, data resource, Data Set, data sharing, demographics, design, Development, Development Plans, Diagnosis, Ensure, ethical legal social implication, Ethicists, Ethics, Evaluation, experience, Failure, Federal Government, Foundations, Future, Genetic, Genetic Databases, Genetic Research, genetic testing, genomic data, Goals, Government, Grant, health data, Health Services, Human, improved, Incentives, Individual, Industry, instrument, Interview, Knowledge, Lawyers, Legal, Legal patent, longitudinal analysis, malignant breast neoplasm, Measures, Medical, meetings, Mentors, Mentorship, Methods, Modeling, Participant, Patient-Focused Outcomes, Patients, phenotypic data, Policies, precision medicine, Prevalence, Privatization, Questionnaire Designs, recruit, Regulation, Research, research and development, Research Design, Research Methodology, Research Personnel, Resources, Sampling, Science of genetics, Scientist, skills, Social Welfare, Source, Specimen, Structure, System, Testing, Training, Translations, Work