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NIH Jan 14, 2019 | K01
Respect for Persons in the Genomics Research Enrollment Process: Incorporating Diverse Experiences and Attitudes
Institution: Seattle Children's Hospital
FOA Number: PA-18-363
Abstract
PROJECT NARRATIVE This project will identify ways to demonstrate respect to prospective research participants that incorporate the perspectives of diverse patient populations who have been historically underrepresented in research. Demonstrating respect in a way that is meaningful to patients from diverse backgrounds has the potential to contribute positively to trusting, collaborative investigator-participant partnerships and to increase recruitment and retention in both the short term and the long term. By building such partnerships, investigators can increase diversity in genomics research, ultimately producing more generalizable and impactful research findings and reducing health disparities.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
K01Project Number:
K01HG010361Start Date:
Jan 14, 2019End Date:
Dec 31, 2023PROJECT TERMS:
Advisory Committees, Asians, Attitude, Award, base, Bioethics, Biomedical Research, Biometry, career, career development, Child, Childhood, Clinical, clinical care, clinical implementation, Clinical Research, Clinical Trials, Colorado, Communication, Communities, community building, Consent, design, Discrimination, Doctor of Philosophy, Economics, Enrollment, Ensure, Environment, ethical legal social implication, European, Evaluation, experience, Feasibility Studies, Federally Qualified Health Center, Feeling, Fellowship, Focus Groups, Foundations, Funding, Future, General Population, Genetic, genome wide association study, Genomics, Goals, health disparity, Health system, Healthcare, Hereditary Malignant Neoplasm, implementation study, improved, Individual, Informed Consent, Institutes, instructor, Intervention, intervention effect, Interview, K-Series Research Career Programs, Laws, Learning, Longitudinal cohort, medical schools, Mentors, Mentorship, Methodology, Methods, Oregon, Outcome, Participant, patient population, Patients, pediatric department, Pediatric Hospitals, Perception, Persons, Population Heterogeneity, Process, programs, prospective, Qualitative Research, Recording of previous events, recruit, Relationship-Building, Research, research and development, Research Design, Research Ethics, Research Institute, Research Methodology, Research Personnel, Resources, Risk Assessment, Role, satisfaction, skills, statistics, study population, success, Techniques, Technology, Testing, theories, therapy development, tool, translational health science, Trust, Underrepresented Populations, Universities, Washington, willingness, Work