Your Research Data Management Team
Data Management Librarian
Senior Research Data Management Librarian
U.S. Human Subjects and Privacy Protection Laws
If your research involves people, education records, or health records, then human subjects and privacy protection regulations may impact how you collect, transmit, access, store, share, and dispose of your research data, especially personally identifiable information (PII) and personal health information (PHI). Three important federal regulations are the Federal Policy for the Protection of Human Subjects ('Common Rule'), The Family Educational Rights and Privacy Act (FERPA), the Health Insurance Portability and Accountability Act (HIPAA Privacy Rule).
- Federal Policy for the Protection of Human Subjects ('Common Rule')The Federal Policy for the Protection of Human Subjects, known as the Common Rule, which governs human subjects research conducted or supported by any federal department or agency, and establishes institutional review boards (IRBs) as the entities that oversee the ethical treatment of human subjects in research.
- Family Educational Rights and Privacy Act (FERPA)FERPA is a federal law that affords parents the right to have access to their children’s education records, the right to seek to have the records amended, and the right to have some control over the disclosure of PII from the education records.
- The Health Insurance Portability and Accountability Act (HIPAA Privacy Rule)The Health Insurance Portability and Accountability Act (HIPAA Privacy Rule), which establishes national standards to protect individuals' medical records and other individually identifiable health information (collectively defined as “protected health information”) and applies to health plans, health care clearinghouses, and those health care providers that conduct certain health care transactions electronically.
UVA Human Subject Research Programs
UVA Institutional Review Boards provide training and other resources to help researchers comply with federally mandated research guidelines. The Institutional Review Board for the Social and Behavioral Sciences (IRB-SBS) is responsible for reviewing all non-medical behavioral human research. The IRB for Health Science Research (IRB-HSR) reviews all medically related research involving human subjects and serves as the HIPAA Privacy Board for research involving Protected Health Information (PHI). Residents for Respectful Research (R3) is a community led companion to UVA's IRB.
- Human Research Protection Program (HRPP)UVA's HRPP advocates for human subjects in research by working in concert with researchers to ensure that they have the education and tools they need to work ethically with participants in their research studies. The Institutional Review Board (IRB) & Post-Approval Monitoring (PAM) offices work with the other HRPP partner offices to ensure that compliance with federal regulations and ethical principles create research environments that are proactively protecting participants as researchers achieve their research goals.
- IRB Social and Behavioral Sciences (IRB-SBS)The IRB-SBS is the IRB responsible for reviewing al UVA non-medical behavioral human research (studies which are considered medically non-invasive) for compliance with federally-mandated research guidelines.
- IRB for Health Sciences Research (IRB-HSR)The IRB-HSR is responsible for reviewing all UVA medically related research involving human subjects conducted. The IRB-HSR also serves as the HIPAA Privacy Board for research involving Protected Health Information (PHI).
- Residents for Respectful Research (R3)This board operates as a community-led companion to UVA’s Institutional Review Board (IRB), forming a mutually beneficial partnership where community participation prevents research projects from exploiting low-wealth residents and ensures that the research conducted is beneficial to the community.