Human Subjects

Research Data Management

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Archiving & Preservation Citing Data Data Repositories Data Storage & Backup Defining Research Data File Formats File Naming & Tracking Changes Funding Agency Guidelines Human Subjects Data Intellectual Property Laboratory Notebooks Metadata & Data Documentation Sharing Data	Human Subjects Data (Privacy & Confidentiality) On this page: Research compliance \| Typical considerations \| Subject-specific & assocation guidelines \| Additional resources 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: Code of Ethics: - See III. A. for some general guidelines AAA’s “Statements on Ethics”, includes statement on anonymity AAA’s “Statements on Ethnography and IRBs”, see section 6 on Informed Consent AnthroDataDPA Privacy and Ethics Page - See also AnthroDataDPA Report, Privacy and ethics, pp. 45-47. 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 Research Repositories, Databases, and the HIPAA Privacy Rule Sample HIPAA Authorization for Research 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) 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 ASA Statement on Data Access and Personal Privacy: Appropriate Methods of Disclosure Control American Statistical Association Ethical Guidelines - See D. Responsibilities to Research Subjects Additional Resources About Data Privacy and Confidentiality American Statistical Association (Committee on Privacy and Confidentiality) 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 & Privacy 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