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Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… that any risk to participants is minimized. How will my privacy be protected? Some genomics research is on … of birth, is separated from your sample to protect your privacy. In other studies, scientists may need sensitive … being revealed? In addition to taking steps to protect the privacy of your genetic information, there is a Federal law …
Health
Genomic medicine involves using genomic information as part of clinical care and the health outcomes and policy implications of that clinical use.
… The Clinic, Genetics, Genetic Testing, Newborn Screening, Privacy In Genomics, Genomic Technology … Genomic medicine …
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
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… NIH and grantee partners on data sharing and privacy policy issues. For the last three years, she has … Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research participant protection … …
About NHGRI
A list of policies and guidance related to funding, genomic data sharing, website operations and our work environment at the National Human Genome Research Institute.
… Data Sharing, NHGRI Policy, NIH Website Policy, Copyright, Privacy Policy … A list of policies and guidance related to …
Policy Issues
Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.
… Insurance Portability and Accountability Act (HIPAA) Privacy Rule also plays a currently ambiguous role regarding … Research, Genetics Research, Clinical Trials, Data Privacy, Human Rights, Federal Laws Protecting Research …
Staff
Cristina Kapustij was the chief of the Policy and Program Analysis Branch at the National Human Genome Research Institute until June 2024.
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… Data Sharing (GDS) Policy, Informed Consent, health privacy regulations, human research participant protection … …
Policy Issues
Revisions to the Common Rule modernize, simplify, and enhance oversight for human subjects research in the United States.
… these technologies along with recommendations on consent, privacy, and data protections that will go through a public … adequate protections are in place for safeguarding the privacy and confidentiality of participants, and (for … Research, Genetics Research, Clinical Trials, Data Privacy, Human Rights, Federal Laws Protecting Research …
About NHGRI
The Genomics and Society Working Group advises on planning and priorities for genomics and society activities at NHGRI.
… Genomics, Legal Issues In Genomics, Genomics Legislation, Privacy And Genomics, Genetic Information Non-discrimination …
15 Ways Genomics Influences Our World
Genomics is fostering an appreciation for what our DNA means for our health, identities and culture.
… of study in ELSI research  are questions about consent and privacy. For example, what do you need to know about a … availability of genomic data has brought changes to privacy considerations as well. When a test is performed on … either through a research or clinical program, how is the privacy of your genomic data maintained  and does that align …
News Release
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… and treatment of infectious diseases; genomic information privacy; communication about prenatal and newborn genomic … builds on previous NHGRI-supported research.  Genetic Privacy and Identity in Community Settings Researchers at … School of Medicine in Nashville, Tennessee, will study privacy risks associated with genomic information. Ellen …