This section contains an extensive list of references. The authors of this module have included an annotated list of what they consider to be the most important references regarding the topic of data acquisition and management.

Introduction Case Study Q & A Annotated Case Foundation Text »Resources« Conclusion

»Resources«

Table of Contents
1: Annotated References on Data Management
2: Web Resources on Data Management
3: References on Data Management
3: Video Materials

1: Annotated References on Data Management

Macrina F. Scientific Integrity: An Introductory Text with Cases, Second Edition, 2000 ASM Press, Chap. 9, Ownership and Data and Intellectual Property; Chap. 11, Scientific Recordkeeping. Francis Macrina gives a detailed overview of data-management debates and practice.

Council on Governmental Relations, 1996. Policy Considerations: Access to and Retention of Research Data. http://www.cogr.edu/docs/RetentionData.pdf This report summarizes the controversies surrounding data definition, data storage, and data sharing and retention.

Steneck N. Introduction to the Responsible Conduct of Research, ORI, Chap. 6: Data Management Practices. http://ori.dhhs.gov/multimedia/acrobat/rcrintro.pdf Nicholas Steneck provides a concise presentation on most of the issues in data management and offers lists that highlight the main points to consider in data management.

2: Web Resources on Data Management

Data Management

Eastern Michigan University, Graduate Studies & Research. Data Acquisition, Ownership, Management and Sharing. http://www.rcr.emich.edu/module3/c_1objectives.html

Heberlein J, 1999. Research Data Management. University of Minnesota. http://www.research.umn.edu/ethics/modResearch2.html

Medical Research Council, MRC Ethics Series: Good Research Practice, December 2000. http://www.mrc.ac.uk/pdf-good_research_practice.pdf

Panel on Scientific Responsibility and the Conduct of Research, National Academy of Sciences, National Academy of Engineering, Institute of Medicine, 1992. Data Handling. Responsible Science, Volume I: Ensuring the Integrity of the Research Process. Washington DC: National Academy Press. http://www.nap.edu/openbook/0309047315/html/index.html

Virginia Commonwealth University. Science Record Keeping. http://www.courses.vcu.edu/rcr/course_materials/record.htm

Data Collection

IRB, Columbia University Medical Center. http://www.cpmcirb.hs.columbia.edu/root/main.htm

Data Sharing

National Institutes of Health, 2003. NIH Grants Policy Statement (03/01). Part II: Terms and Conditions of NIH Grant Awards. On publications, intellectual-property rights, sharing research resources, and access to data.

NSF, 2002. Data Sharing Policy, No. 36 in the policy statement. http://www.nsf.gov/pubs/2001/gc101/gc101rev1.pdf

Interuniversity Consortium for Political and Social Science Research, repository for data sharing. http://www.icpsr.umich.edu/access/deposit/index.html

Council on Governmental Relations, Policy Considerations: Access to and Retention of Research Data. http://www.cogr.edu/docs/RetentionData.pdf

State University at Stony Brook, Data Resource and Sharing Policy. http://www.research.sunysb.edu/research/ip.html

Data Retention and Storage

ESDS Access and Preservation. http://www.esds.ac.uk

Stanford University Policy, 1997. Retention of and Access to Research Data. Research Policy Handbook, RPH 2.10. http://www.stanford.edu/dept/DoR/rph/2-10.html

University of Pittsburgh, Retention and Access to Data Policy. http://www.pitt.edu/~provost/retention.html

3: References on Data Management

American Association for the Advancement of Science, Science and National Security in the Post-9/11 Environment. http://www.aaas.org/spp/post911/publishing/

Barnes M, Heffernan K, 2004. The “Future Uses” Dilemma: Secondary Uses of Data and Materials by Researchers for Commercial Research Sponsors, Medical Research Law & Policy, Vol. 3, No. 11: 440-450.

Berns KI, Bond EC, Manning FJ, Editors (Committee on Resource Sharing in Biomedical Research, Division of Health Sciences Policy, Institute of Medicine), 1996. Resource Sharing in Biomedical Research. Washington, DC: National Academy Press. http://www.nap.edu/books/0309055822/html/index.html

Bok D. 2003. Universities in the Marketplace: The Commercialization of Higher Education. Princeton, NJ: Princeton University Press.

Brown C, 2003. Washington U. Sues Former Researcher Over Ownership of Biorepository Samples. Medical Research Law & Policy Report, Vol. 2, No. 16: 592-593. Washington DC: Bureau of National Affairs.

Case Western University. University Policy on Custody of Research Data. University Policy on Custody of Research Data (PDF)

Council on Governmental Relations, 1996. Policy Considerations: Access to and Retention of Research Data. http://www.cogr.edu/docs/RetentionData.pdf

Duncan GT, Jabine TB, de Wolf VA (Panel on Confidentiality and Data Access, National Research Council), 1993. Private Lives and Public Policies: Confidentiality and Accessibility of Government Statistics. National Academies Press. http://www.nap.edu/books/0309047439/html/index.html

ESDS Access and Preservation. http://www.esds.ac.uk

Eastern Michigan University, Graduate Studies & Research. Data Acquisition, Ownership, Management and Sharing. http://www.rcr.emich.edu/module3/c_1objectives.html

Fields KL, Price AR, 1993. Problems in Research Integrity Arising from Misconceptions About the Ownership of Research. Academic Medicine, Vol. 68, No. 9, September supplement 1993: S61-S64.

Fienberg SE, Martin ME, Straf ML, Editors (Committee on National Statistics, National Research Council), 2003. Sharing Research Data. National Academies Press.

Hasselmo N, Magrath CP, 2001. AAU/NASULGC Letter to OMB on Proposed Guidelines on Research Data. Association of American Universities.

Heberlein J, 1999. Research Data Management. University of Minnesota. http://www.research.umn.edu/ethics/modResearch2.html

IRB, Columbia University Medical Center. http://www.cpmcirb.hs.columbia.edu/root/main.htm

Institute of Medicine, 2000. Protecting Data Privacy in Health Services Research. Washington DC: National Academies Press. http://books.nap.edu/html/data_privacy/

Interuniversity Consortium for Political and Social Science Research, repository for data sharing. http://www.icpsr.umich.edu/access/deposit/index.html

Jones D, Gear R, Galvin KA, 2002. Stored Human Tissue: An Ethical Perspective on the Fate of Anonymous, Archival Material. Journal of Medical Ethics, Vol. 29: 343-347. http://jme.bmjjournals.com/cgi/content/full/29/6/343

Koontz LD (U.S. GAO), 2003. Geographic Information Systems: Challenges to Effective Data Sharing. Testimony Before the Subcommittee on Technology, Information Policy, Intergovernmental Relations and the Census, Committee on Government Reform, House of Representatives.

Mackie C, Bradburn N, Editors (Committee on National Statistics, National Research Council), 2003. Improving Access to and Confidentiality of Research Data: Report of a Workshop. National Academies Press. http://www.nap.edu/books/0309071801/html/

Macrina F. Scientific Integrity: An Introductory Text with Cases, Second Edition, 2000 ASM Press, Chap. 9, Ownership and Data and Intellectual Property; Chap. 11, Scientific Recordkeeping.

Marshall E, 2004. Experts Warn Against Censoring Basic Science. Science, Vol. 306: 2023.

Medical Research Council, MRC Ethics Series: Good Research Practice, December 2000. http://www.mrc.ac.uk/pdf-good_research_practice.pdf

Merz JF, Sankar P, Taube S, Livolsi V, 1997. Use of Human Tissues in Research: Clarifying Clinician and Researcher Roles and Information Flow. Journal of Investigative Medicine. Vol. 45, No. 5: 252-257.

Michigan State University (University Research Council), 2001. Research Data: Management, Control and Access.

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

National Center for Injury Prevention and Control. CDC/ATSDR Policy on Releasing and Sharing Data.

NIH, 2003. NIH Grants Policy Statement (03/01). Part II: Terms and Conditions of NIH Grant Awards. On publications, intellectual-property rights, sharing research resources, and access to data.

NIH. Model Organisms for Biomedical Research—Sharing Biomedical Research Resources: Principles and Guidelines for Recipients of NIH Research Grants and Contracts. http://www.nih.gov/science/models/sharing.html http://ott.od.nih.gov/NewPages/RTguide_final.html

NSF, 2002. Data Sharing Policy. http://www.nsf.gov/pubs/2001/gc101/gc101rev1.pdf

Office of Management and Budget, Executive Office of the President, 2001. Guidelines for Ensuring and Maximizing the Quality, Objectivity, Utility, and Integrity of Information Disseminated by Federal Agencies.

Guidelines for Ensuring and Maximizing the Quality, Objectivity, Utility, and Integrity of Information Disseminated by Federal Agencies

ORI Data Management Guidelines Issued by British Medical Council, Sept. 2001. http://ori.dhhs.gov/html/resources/britishmed.asp

OHRP, HHS. Guidance on Research Involving Coded Private Information or Biological Specimens, August 10, 2004. http://www.hhs.gov/ohrp/humansubjects/guidance/cdebiol.pdf

OnlineEthics.org. Federal Regulations for Animal Research. http://onlineethics.org/reseth/mod/regan.html

Panel on Scientific Responsibility and the Conduct of Research, National Academy of Sciences, National Academy of Engineering, Institute of Medicine, 1992. Data Handling. Responsible Science, Volume I: Ensuring the Integrity of the Research Process. Washington DC: National Academy Press. http://www.nap.edu/openbook/0309047315/html/index.html

Polk HC, Rikkers LF, et al., 2002. Scientific Data from Clinical Trials: Investigators’ Responsibilities and Rights. Annals of Surgical Oncology, 9(5): 421-422. The Society of Surgical Oncology, Inc.

Rhoades SD, Bowie DA, Hergenrather KC, Collecting Behavioral Data Using the World Wide Web: Considerations for Researchers. J. Epidemiological Community Health, 2003, Vol 57: 68-73.

Stanford University Policy, 1997. Retention of and Access to Research Data. Research Policy Handbook, RPH 2.10. http://www.stanford.edu/dept/DoR/rph/2-10.html

Stanford University, 2001. Openness in Research Checklist. http://www.stanford.edu/dept/DoR/C-Res/ITARlist.html

Steneck N, Introduction to the Responsible Conduct of Research, ORI, Chap. 6: Data Management Practices. http://ori.dhhs.gov/multimedia/acrobat/rcrintro.pdf

University of California, San Diego. Internet-based Course on the Responsible Conduct of Research: Data Management. http://ethics.ucsd.edu/courses/integrity/assignments/data.html

University of Connecticut Health Center, Data Ownership Policy. http://ethics.ucsd.edu/courses/integrity/assignments/data.html

University of Kentucky, ORI, 2003. Data Retention & Ownership Policy. http://www.research.uky.edu/ori/data.htm

University of Pittsburgh, Retention and Access to Data Policy. http://www.pitt.edu/~provost/retention.html

Virginia Commonwealth University. Policy on Research Data. http://www.research.vcu.edu/p_and_g/data.htm

Virginia Commonwealth University. Science Record Keeping. http://www.courses.vcu.edu/rcr/course_materials/record.htm