NOTE: Referencing sites and resources in this document does not mean that the NIH approves or endorses them. They are included in this document only as potential resources for scientists.
The present policy on sharing research data is an extension of long-standing NIH policies on sharing of research resources and results, as well as providing prompt and effective access to research tools. For additional information, see:
NIH Grants Policy, Part II Subpart A, Availability of Research Results: Publications, Intellectual Property Rights, and Sharing Biomedical Research Resources.
Public Health Service Policy Relating to Distribution of Unique Research Resources Produced with PHS Funding.
Sharing Biomedical Research Resources: Principles and Guidelines for Recipients of NIH Research Grants and Contracts.
Reports issued by the following entities may be of interest:
- NIH Institutes and Centers
- National Research Council
- National Science Foundation
- Office of Management and Budget
- General Accounting Office
Confidentiality, Data Security, and Cancer Research: Perspectives from the National Cancer Institute. March 23, 1999.
National Cancer Institute (1999) Confidentiality, Data Security, and Cancer Research: A Workshop Report. Bethesda, MD: National Cancer Institute/National Institutes of Health.
National Heart, Lung, and Blood Institute (NHLBI) Limited Access Datasets and Policy for Distribution of Data.
Institute of Medicine (1996) Resource Sharing in Biomedical Research. Committee on Resource Sharing in Biomedical Research. Kenneth Berns, Enriqueta Bond, and Frederick Manning, Eds. Washington, DC: National Academy Press.
National Research Council (1985) Sharing Research Data. Stephen E. Fienberg, Margaret E. Martin, and Miron L. Straf, Eds. Committee on National Statistics. Washington, D.C.: National Academy Press.
National Research Council and the Social Science Research Council (1993) Private Lives and Public Policies: Confidentiality and Accessibility of Government Statistics. Panel on Confidentiality and Data Access. George T. Duncan, Thomas B. Jabine, and Virginia A. de Wolf, Eds. Committee on National Statistics. Washington, DC: National Academy Press.
National Research Council (2000) Protecting Data Privacy in Health Services Research. Committee on the Role of Institutional Review Boards in Health Services Research Data Privacy Protection. Washington, DC: National Academy Press.
National Research Council (2000) Improving Access to and Confidentiality of Research Data: Report of a Workshop. Christopher Mackie and Norman Bradburn, Eds. Committee on National Statistics. Washington, DC: National Academy Press.
National Science Foundation Policy on Dissemination and Sharing of Research Results. See Section 734 of http://www.nsf.gov/pubs/2002/nsf02151/gpm7.htm#730
Office of Management and Budget (1994) Statistical Policy Working Paper 22: Report on Statistical Disclosure Limitation Methodology. Prepared by Subcommittee on Disclosure Limitation Methodology, Federal Committee on Statistical Methodology. Statistical Policy Office, Office of Information and Regulatory Affairs.
Office of Management and Budget (1999) Checklist on Disclosure Potential of Proposed Data Releases. Prepared by the Interagency Confidentiality and Data Access Group, An Interest Group of the Federal Committee on Statistical Methodology. Statistical Policy Office, Office of Information and Regulatory Affairs.
http://www.fcsm.gov/committees/cdac/checklist_799.doc (MS Word - 230 KB)
U.S. General Accounting Office (2001) Record Linkage and Privacy: Issues in Creating New Federal Research and Statistical Information. Washington, DC: US General Accounting Office.
http://www.gao.gov/new.items/d01126sp.pdf (PDF - 1.43 MB)
American Psychological Association Data Archiving and Data Sharing
HIPAA Privacy Rule Information for Researchers