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.
  http://grants.nih.gov/grants/policy/nihgps_2003/NIHGPS_Part7.htm#_Toc54600131



• Public Health Service Policy Relating to Distribution of Unique Research Resources Produced with PHS Funding.
  http://grants.nih.gov/grants/guide/notice-files/not96-184.html



• Report of the National Institutes of Health (NIH) Working Group on Research Tools, Presented to the Advisory Committee to the Director, June 4, 1998.
  http://www.nih.gov/news/researchtools/index.htm



• Sharing Biomedical Research Resources: Principles and Guidelines for Recipients of NIH Research Grants and Contracts.
  http://www.nih.gov/science/models/sharing.html

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

Other Web sites that may be of interest

NIH Institutes and Centers

Confidentiality, Data Security, and Cancer Research: Perspectives from the National Cancer Institute. March 23, 1999.
http://www3.cancer.gov/confidentiality.html

National Cancer Institute (1999) Confidentiality, Data Security, and Cancer Research: A Workshop Report. Bethesda, MD: National Cancer Institute/National Institutes of Health.
http://www3.cancer.gov/scienceresources/announcements/confintro.html

National Heart, Lung, and Blood Institute (NHLBI) Limited Access Datasets and Policy for Distribution of Data.
http://www.nhlbi.nih.gov/resources/deca/default.htm

National Institute of Child Health and Human Development (NICHD), “Data Access and Archiving: Options for the Demographic and Behavioral Sciences Branch,” (August 2002).
http://www.nichd.nih.gov/about/org/cpr/dbs/

National Research Council

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.
http://bob.nap.edu/html/biomed/

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.
http://books.nap.edu/catalog/2033.html

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.
http://books.nap.edu/catalog/2122.html

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.
http://www.nap.edu/books/0309071879/html/

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.
http://books.nap.edu/catalog/9958.html

National Science Foundation

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

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.
http://www.fcsm.gov/working-papers/wp22.html

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)

General Accounting Office

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)

Other Websites that May Be of Interest

American Psychological Association Data Archiving and Data Sharing
http://www.apa.org/science/data/homepage.html

HIPAA Privacy Rule Information for Researchers
http://privacyruleandresearch.nih.gov/

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