Any data that may be shared must adhere to appropriate privacy and security measures. This is particularly true for research data involving human subjects. Final research datasets from studies that do not include human subjects are generally exempt from the privacy guidelines appropriate for human subjects.
Human Subjects and Privacy Issues
from NIH Data Sharing Policy: http://grants.nih.gov/grants/policy/data_sharing/data_sharing_guidance.htm#hs
It is the responsibility of the investigators, their Institutional Review Board (IRB), and their institution to protect the rights of subjects and the confidentiality of the data.
Prior to sharing, data should be redacted or stripped of any items that could identify individual participants. In addition to removing all direct identifiers, e.g., name, address, telephone numbers, and Social Security Numbers, researchers should consider removing indirect identifiers and other information that could lead to "deductive disclosure" of participants' identities. Alternatively, an investigator may restrict access to the data at a controlled site, sometimes referred to as a data enclave.”
“Investigators who are working for or who are themselves covered entities under the Health Insurance Portability and Accountability Act (HIPAA) must consider issues related to the Privacy Rule, a Federal regulation under HIPAA that governs the protection of individually identifiable health information. The Department of Health and Human Services (DHHS) provides guidance on research and the Privacy Rule elsewhere (http://www.hhs.gov/ocr/). It should be noted that the Privacy Rule is relatively new, and additional information and guidance will be shared on the DHHS website as soon as it is available.
UIUC Institutional Review Board
The Institutional Review Board (IRB) has authority and responsibility for ensuring the ethical and legal conduct of research on human subjects. All research involving human subjects that is conducted at or sponsored by the University of Illinois, whether funded or unfunded and whether conducted by faculty or others, must comply with campus and federal policies for the protection of human subjects.
- Office of Sponsored Programs & Research Administration
The Office of Sponsored Programs and Research Administration (OSPRA) is a unit under the Office of Vice Chancellor for Research (OVCR). OSPRA interacts with faculty, students, department business staff, University administration, and external sponsor program officers and award negotiators to provide service and support to the University's missions of instruction, research, public service, and economic development. OSPRA is comprised of three divisions: Proposal, Award, and Processing.
- Office of Technology Management
The Office of Technology Management is responsible for managing the intellectual property generated by research and educational activities at the University. The Office seeks to guide technologies through every appropriate stage of the commercialization process by providing services that include the evaluation, protection, marketing, and licensing of intellectual property.
- Office of the Vice Chancellor for Research
The Office of the Vice Chancellor for Research (OVCR) leads, enables, and supports research initiatives, technology commercialization and knowledge transfer at the University of Illinois. The OVCR has policymaking and oversight responsibility for the research mission and works collaboratively with the academic colleges and other administrative units to lead new research initiatives and to facilitate the ongoing scholarly endeavors of faculty, staff, and students.
- Responsible Conduct of Research
The Office of the Vice Chancellor for Research (OVCR) provides programs and services to help you meet the ethical and regulatory requirements for the responsible conduct of research. The chart on the linked page provides information on how to meet those requirements and contact information for the units that offer support.
US Government Resources
- HIPPA Privacy
The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule is the first comprehensive Federal protection for the privacy of personal health information. Research organizations and researchers may or may not be covered by the HIPAA Privacy Rule. This website provides information on the Privacy Rule for the research community.
- Office for Human Research Protections
The Office for Human Research Protections (OHRP) provides leadership in the protection of the rights, welfare, and wellbeing of subjects involved in research conducted or supported by the U.S. Department of Health and Human Services (HHS). OHRP helps ensure this by providing clarification and guidance, developing educational programs and materials, maintaining regulatory oversight, and providing advice on ethical and regulatory issues in biomedical and social-behavioral research.