Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM
Institution: VANDERBILT UNIVERSITY MEDICAL CENTER
FOA Number: PA-17-446
Abstract
PROJECT NARRATIVE Very little research has been done regarding non-STI-related health disparities affecting sexual and gender minorities (SGM). Even less is known about what these minorities think about the desirability of research that combines genetic variation and data about sexual orientation and gender identity with other health and demographic information, strategies required to understand and address these disparities. In this pilot study, we will develop and use a focus group guide with educational materials with diverse SGM groups to explore these issues, tools that can then be used in other sites around the country in future research.
FUNDING AGENCY:
Funder:
NIH
Institute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTE
Funding Type:
R21
Project Number:
R21HG010652
Start Date:
Sep 1, 2019
End Date:
Aug 31, 2021
PROJECT TERMS:
Academic Medical Centers; Address; Advocate; Affect; Attitude; Behavioral; Biological Factors; Characteristics; Clinic; cohort; Collection; Communities; Complex; Country; Data; Data Analyses; data sharing; Educational Materials; Enrollment; Ensure; Environment; ethical legal social implication; Ethics; evidence base; experience; Focus Groups; Fright; Gays; Gender Identity; Genes; Genetic; genetic identity; genetic privacy; Genetic Research; Genetic Variation; genomic data; Genomics; Goals; Health; health disparity; Healthcare; heritability; improved; Individual; Leadership; member; Methods; Minority; minority communities; Minority Groups; Participant; Phenotype; Pilot Projects; Play; Policies; Politics; Population; precision medicine; Privacy; programs; Protocols documentation; Qualitative Research; Recording of previous events; Reporting; Research; research in practice; Research Personnel; Risk Perception; Role; Sex Orientation; Sexual and Gender Minorities; sexual minority; Site; social; social stigma; Societies; Time; tool; trait; Translations; United States National Institutes of Health; willingness