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Policy Issues
There are laws and policies that serve to protect the privacy of individuals' genomic information.
… subjects research; therefore, they are not subject to the informed consent requirements of the Common Rule. However, some groups … concerns. While many companies have robust privacy and informed consent policies, no federal laws prohibit companies …
For Patients and Families
A list of resources and information on financial aid for medical treatment.
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Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… for Requesting an Exception for Samples Lacking Explicit Consent for Future Research Use and Broad Data Sharing    … the sharing of sensitive data to discuss approaches for informed consent, appropriate use, risk mitigation and … Human Research Participant Data, September 2022 NIH Informed Consent for Secondary Research with Data and …
Staff
Dr. Edward Giniger is an adjunct investigator in NHGRI's Genetics and Molecular Biology Branch.
Staff
Ellen Rolfes is the director of the Division of Management at and executive officer of the National Human Genome Research Institute.
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eMERGE
Important information about RFAs, upcoming dates, frequently asked questions and helpful links.
… 1 and continue into Year 4 Is the plan to have a central consent form which will be used by all clinical sites? Yes, there will be a central consent form that might need slight modification based on …
Staff
Julia Fekecs is a visual information specialist in NHGRI’s Office of Communications.
Policies and Guidance
NHGRI links to external websites to supplement the information found on our website.
For Patients and Families
The partnership engages communities on genomics, informs and shares perspectives, and impacts the focus of research.
Policy Issues
In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.
… Review Boards, and integrating information on GINA into informed consent forms. To comply with GINA, informed consent forms should include information on any …