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Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… or data are de-identified); however, there may be other policy or ethical reasons for conveying that such research … are deceased.  While informed consent is not required by federal regulations for research with de-identified samples … at institutions that are not subject to HIPAA (including federal labs), but portions of the HIPAA Privacy Rule may …
Talking Glossary
La Ley de No Discriminación por Información Genética (GINA) es una legislación federal de los Estados Unidos que protege a las personas de la discriminación con base en su información genética persona en lo que respecta a los seguros de salud y el empleo.
… por Información Genética (GINA) es una legislación federal de los Estados Unidos que protege a las personas de … Information Nondiscrimination Act (abbreviated GINA) is federal legislation in the United States that protects … por Información Genética (GINA) es una legislación federal de los Estados Unidos que protege a las personas de …
MINC
Use the resources to help you design an education program or policy for your setting.
… the resources to help you design an education program or policy for your setting.  Resource Title Type Cost Action … Module Pdf Free Fox Chase PA: Risk Assessment Program Policy Free Genetics Home Reference Online Free Genetics of … the resources to help you design an education program or policy for your setting. … Use the resources to help you …
Health
Genomic medicine involves using genomic information as part of clinical care and the health outcomes and policy implications of that clinical use.
… therapeutic decision-making) and the health outcomes and policy implications of that clinical use. Already, genomic … on engagement of the public, healthcare providers and policy makers in genomics topics: Education and Community Involvement Branch (ECIB) and Policy and Program Analysis Branch (PPAB) . Resources and …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… the large number of resources available regarding the DMS Policy, where should I start? NIH resources regarding the DMS Policy are available on the NIH Scientific Data Sharing site. … of Confidentiality  would be insufficient explicit federal, state, local, or Tribal law, regulation, or policy …
Administrative
The Management Analysis and Workforce Development Branch provides advisory services, develops policies and procedures, and coordinates implementation at NHGRI.
Events
Data sharing has been a central tenet of the field of genomics since the Human Genome Project.
Data Sharing
The NHGRI Data Sharing Governance Committee is responsible for the activities necessary for the Institute to implement and maintain NIH and NHGRI data sharing policies.
… to NHGRI data sharing policies. Providing consultation for policy or practice development. … Appointed Members  Erin M. …
Organizational Structure
NHGRI’s Office of Genomic Data Science (OGDS) provides leadership, strategic guidance and coordination for NHGRI activities, programs and policies in genomic data science.
… career researchers September 7, 2023 NIH data management policy commits to making research results available | The … Research and the New NIH Data Management and Sharing (DMS) Policy Webinar May 23, 2023 Webinar: Educational Hub for …
Staff
Dr. Dave Kaufman is a program director Division of Genomics and Society​ at the National Human Genome Research Institute.
… … Dave Kaufman, Ph.D. … Dave Kaufman, return of results policy, ethical legal and social implications, genomic … citizen science … Dave Kaufman, return of results policy, ethical legal and social implications, genomic …