University of Oregon

Research Data Management

Best Practices

Human Subjects Data (Privacy & Confidentiality)

UO Research Compliance Services

UO Research Compliance Services provides detailed information on protocols for protecting respondent confidentiality.

Typical Considerations

  • If datasets contain identifiable information on human subjects, a document outlining the terms and conditions of future access should be created by the research unit and deposited with the data.
  • De-identification or anonymization of data can sometimes be used to prepare data so that data can be shared without including information that might identify the participants in a study.
    • Examples of Identifiers in data that will need to be removed [Note: this is not an exhaustive list]:
      • Direct identifiers: data elements gathered that directly identify a respondent, like a complete name or address
      • Indirect identifiers: variables that when aggregated can identify a person
      • Geographic location-embedded data (like geo-referenced information or street addresses).
  • As an alternative, datasets can become restricted use collections in a repository if de-identification impedes the research value of the data.
    • Restrict access to a list of approved researchers so that mediated access is available.

Subject-Specific and Association and Society Guidelines

Anthropology

American Anthropological Association's latest (2012) Statement on Ethics

See also:

Archaeological Institute of America Code of Professional Standards

- See 1. “Responsibilities to the Archaeological Record”, paragraphs 4 and 6, for requirements regarding preserving data and the need for plans to that effect.

International Society for Ethnobiology – Code of Ethics

Society for Applied Anthropology – Statement of Ethical and Professional Responsibilities

- See paragraph 1.

Biomedical and Health

U.S. Dept. of Health and Human Services, Office for Human Research Protections (OHRP) – Policy & Guidance Library

U.S. Dept. of Health and Human Services – an explanation of the HIPAA Privacy Rule in research

U.S. Dept. of Health and Human Services, National Institutes of Health – Protecting Personal Health Information in Research: Understanding the HIPAA Privacy Rule

Education

American Educational Research Association Code of Ethics

This code was very recently updated and contains a lot of information about handling data. See sections 12 “Confidentiality”, 13 “Informed Consent”, and 14 “Research Planning, Implementation and Dissemination”.

U.S. Dept. of Education—Protection of Human Subjects in Research page

Folklore

American Folklore Society – AFS Position Statement on Research with Human Subjects

Geospatial Data organizations

American Society for Photogrammetery and Remote Sensing Code of Ethics

Urban and Regional Information Systems Association (URISA) GIS Code of Ethics

History

Oral History Association Principles and Best Practices

Political Science

American Political Science Association’s page on Ethics in Political Science -- includes the APSA Guide to Professional Ethics in Political Science, 2nd edition, revised 2008

- See Principles Governing Research on Human Subjects, p. 27

Psychology

American Psychological Association’s Ethical Principles of Psychologists and Code of Conduct

- See Standards 4 and 8: Privacy and Confidentiality; Research and Publication

Sociology

American Sociological Association’s Code of Ethics

- See Ethical Standards 11; 12, Confidentiality ; Informed Consent

National Association of Social Workers’ Code of Ethics

- See section 5.02 “Evaluation and Research”

Statistics

American Statistical Association Ethical Guidelines

- See D. Responsibilities to Research Subjects

Additional Resources About Data Privacy and Confidentiality

American Statistical Association
This page contains a wealth of information, including a primer on key concepts and terms, and resources for training on privacy and confidentiality protection; information on techniques for preventing unintended disclosures when sharing confidential data; explanations of specific issues and examples of protecting privacy and confidentiality for biological and health data, for business and economic data, and for demographic data;  links to key laws and regulations; resources related to the protection of human subjects and ethical research.

Federal Committee on Statistical Methodology, Confidentiality and Data Access
Includes the Checklist on disclosure potential of proposed data releases and links to other helpful resources.

ICPSR Confidentiality pages

ICPSR Guide to Social Science Data Preparation and Archiving, 4th ed. – see Chapter 3 (Confidentiality in Qualitative Data, p.19) and Chapter 5.

Privacy-Preserving Data Publishing: An Overview by Raymond Chi-Wing Wong and Ada Wai-Chee Fu. Synthesis Lectures on Data Management. Morgan & Claypool Publishers, 2010 [UO Users Only]

Maintained by: Brian Westra, bwestra@uoregon.edu
University of Oregon Libraries
1501 Kincaid Street Eugene, OR
97403-1299
T: (541) 346-3053
F: (541) 346-3485
Make a Gift