Search Results
Health
Information about genomics competencies, patient care, and related partnership and outreach activities at NHGRI.
… patients. These resources provide reliable, up-to-date information about genomics competencies, patient care, and … Information about genomics competencies, patient care, and … Information about genomics competencies, patient care, and …
About NHGRI
Search for names, email addresses, phone numbers and other contact information of NHGRI staff.
… names, email addresses, phone numbers and other contact information of staff at the National Human Genome Research … names, email addresses, phone numbers and other contact information of staff at the National Human Genome Research … names, email addresses, phone numbers and other contact information of NHGRI staff. …
Staff
Dr. Susan Persky is an associate investigator in the Social and Behavioral Research Branch at the National Human Genome Research Institute.
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… platform for future communication of complex genomics information. Dr. Persky's substantive research program sits … prepare for and optimally shape the diffusion of genomic information about common, complex health conditions into … can backfire, causing individuals to engage in defensive processing, or weakening their perceptions of efficacy and …
Staff
Dr. Dave Kaufman is a program director Division of Genomics and Society​ at the National Human Genome Research Institute.
… to Genomic Healthcare and the integration of genomic information and technologies into clinical care. He also … issues. Visit the ELSI Research Areas  webpage for more information on areas of ELSI research. … policy, ethical legal and social implications, genomic information, citizen science …
Policy Issues
The 9 steps a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example.
… before becoming a law. The history of the Genetic Information Nondiscrimination Act  (GINA), a law that was … can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example. … can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example. …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… studies, scientists may discover new health-related information about volunteers who have chosen to participate … human genome, there remains much to be discovered. Genomic information is interpreted differently over time as more is … Clinical research may yield new health-related information about volunteers who have chosen to participate …
Health
Genomic medicine involves using genomic information as part of clinical care and the health outcomes and policy implications of that clinical use.
… an emerging medical discipline that involves using genomic information about an individual as part of their clinical … to conduct and then analyze, and because disseminating information and educating healthcare workers about a new … Genomic medicine involves using genomic information as part of clinical care and the health outcomes …
Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… data — such as associated phenotype data (e.g., clinical information relevant to the disease under study), exposure data, and descriptive information (e.g., protocols or methodologies used) — are … ) and NHGRI GDS Policy Data Standards  for more information about NHGRI’s guiding principles and expectations …
Strategic Vision
Staff within the institute and colleagues in the genomics community organized and contributed to the >50 events associated with the strategic planning process (e.g., town halls, dedicated workshops, conference sessions, and webinars) and provided critical feedback.