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Research Funding
The following are research areas of interest that have been identified by the participating NIH institutes and centers (ICs). Program Officer contact information is also included.
… participant preferences, informed consent, governance, privacy and security, and data sharing); this includes … such as the inability to have an open future, genetic privacy, and insurance or job discrimination. Use of residual … in research on potential stigmas, discriminations, and privacy concerns associated with either identification of …
Research Funding
The centers study in innovative ways to address important ethical, legal, and social issues related to advances in genomics.
… decision-making and couples communication. Genetic Privacy and Identity in Community Settings Ellen Wright … J.D., $4 million (FY 2016-2019) This center is studying privacy risks associated with genomic information, examining … the effectiveness of legal and policy efforts to reduce privacy risks, and studying the likelihood that lapses in …
Policies and Guidance
NHGRI links to external websites to supplement the information found on our website.
… private organizations. You are subject to external site's privacy policy when you leave our site. We proudly comply …
Research Funding
The NHGRI Ethical, Legal and Social Implications (ELSI) Research Program Abstracts and Activities Database organizes abstracts for all ELSI-related activities
… an ELSI issue, (i.e., discrimination, genetic testing or privacy) The type of grant (i.e., education, research or …
Administrative
The Management Analysis and Workforce Development Branch provides advisory services, develops policies and procedures, and coordinates implementation at NHGRI.
… and workforce management and optimization services: Privacy Coordination and Compliance Records Management Risk …
Research Funding
The ELSI Publications and Products Database organizes publications for ELSI projects and activities by the last name of the principle investigator.
… an ELSI issue, (i.e., discrimination, genetic testing or privacy) The name of the author The name of the journal The …
Clinical Research
An Observational Prospective Natural History Study of Metabolism, Infection and Immunity During the COVID19 Pandemic (At-home Participation).
… and/or symptom updates with us after joining the study.  Privacy and confidentiality are very important to us. All …
Clinical Research
A study to learn more about the role of viral infection and biomarkers of immunity in mitochondrial disease, utilizing new technology with Neoteryxâ„¢ fingerstick at-home sampling.
… to undergo a physical exam by a physician via telehealth. Privacy and confidentiality are very important to us. All …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening …
Policy Issues
The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.
… and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening …