Search Results
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. … Biography … Related … policy, ethical legal and social implications, genomic information, citizen science … Dave Kaufman, return of …
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.
… biomarkers of immunity in mitochondrial disease using new technology with Neoteryx ™ fingerstick at-home sampling. … … Privacy and confidentiality are very important to us. All information shared with us will be coded. We will not return … of immunity in mitochondrial disease, utilizing new technology with Neoteryx™ fingerstick at-home sampling. … A …
Educational Resources
Deoxyribonucleic acid (abbreviated DNA) is the molecule that carries genetic information for the development and functioning of an organism.
… (abbreviated DNA) is the molecule that carries genetic information for the development and functioning of an … (abbreviated DNA) is the molecule that carries genetic information for the development and functioning of an …
Health
Guidance on collecting your family health history information before visiting the doctor.
… and an up-to-date Web browser, you provide your health information to build a drawing of your family tree and a … … Guidance on collecting your family health history information before visiting the doctor. … Guidance on collecting your family health history information before visiting the doctor. … Health …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… the relevant template below or send the basic study information needed for study registration to the NHGRI GPA ( nhgrigpa@mail.nih.gov ):  NHGRI’s Basic Study Information Template    Template for Requesting an … data sharing policies. For general NIH data sharing policy information, please visit NIH's Scientific Data Sharing …
AnVIL
The Data Use Oversight System (DUOS) is a semi-automated study registration and DAR management service informed by the GA4GH DUO standard, which enables the secondary use of human genomics and other controlled-access data in compliance with the informed consent of a study’s participants.
… datasets can be found in the DUOS Data Library .  … More information on DUOS for: Researchers Signing Officials … … Data Access Committees (DACs) … Milestones … Additional Information … Learn More … The D ata U se O versight S ystem …
Talking Glossary
Genomic medicine is a medical discipline that involves using a person’s genomic information as part of their clinical care.
… medical discipline that involves using a person’s genomic information as part of their clinical care. … Genomic … medical discipline that involves using a person’s genomic information as part of their clinical care. Other similar … and precision medicine. For some conditions, genomic information can be used to help diagnose disease, predict …
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 … and management research. Journal of Diabetes Science and Technology, 5:333-339. 2011. [ PubMed ] Persky S, McBride CM. …
Research Funding
IGNITE enhances genomic medicine by supporting the development of methods for incorporating genomic information into clinical care.
… The IGNITE demonstration projects will incorporate genomic information into the electronic medical record (EMR) and … practices for implementation is a key goal so that the information generated from the program will contribute to the growing knowledge base of using genomic information in patient care. For more information, visit the …
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… and cures. This page provides an overview of the Genetic Information Nondiscrimination Act (GINA) and describes what … protections GINA does and does not offer. … The Genetic Information Nondiscrimination Act (GINA) of 2008 protects … Americans from discrimination based on their genetic information in both health insurance (Title I) and employment …