Mission of the Program on Human Subject Protection and Disclosure Risk Analysis

Program Project Principal Investigator
Myron P. Gutmann
Director and Senior Research Scientist
Inter-university Consortium for Political and Social Research
Institute for Social Research
University of Michigan

This program will improve scientific understanding and enhance prevention of risks to participants in social science research, through four coordinated and tightly linked projects. These projects address a major concern of researchers and policy makers, and parts of the lay public: diagnosing, communicating and reducing potential harms to human subjects of research. At the heart of our approach is the recognition that observational social science research projects present quite different risks to participants than do the physical interventions common to biomedical research. Rather than producing immediate physiological harm, social science studies that involve interviews, questionnaires, or observation of people have potential harms arising from breaches of the pledge of confidentiality of data provided by the researcher. The most threatening of possible later risks is that of deliberate or inadvertent data disclosure from electronic files that arc made publicly available for secondary analysis. We will study the potential for harm that might arise by revealing information to others that the informant wishes to keep confidential, or by allowing a third party to collect and match information from multiple sources that might have a negative impact on the person involved.

The projects combine to a coordinated focus on

1. Inventing effective ways to communicate risk to subjects in informed consent statements (Project I),
2. Measuring the magnitude of the risks of disclosure of confidential data on human subjects (Project II),
3. Devising and evaluating means to minimize the susceptibility to disclosure of public use files (Project II),
4. Developing practical tools of disclosure risk reduction in public use files (Project III), and
5. Educating the research community in their use. (Project IV)

This is a new program of research at the Institute for Social Research (ISR) and the University of Michigan, the largest university-based social science research and data organization in the world. While new, it builds on the established strengths of two of the units of ISR, the Survey Research Center (SRC) and the Inter-university Consortium for Political and Social Research (ICPSR). These two long-established units have unique capabilities for undertaking this research program and for translating and disseminating the knowledge obtained into the largest possible social science community.

SRC is one of the most sophisticated centers for the conduct of large- and small-scale statistical surveys operating today, with a scientific staff with unmatched capability for the design and administration of surveys, especially those that will be subjected to extensive secondary analysis.

ICPSR is the oldest and largest archive of social science data in the world, with an unparalleled reputation for the effective preservation and dissemination of data that are safe from risk of disclosure.

The results of the program will come from five years of close collaboration of researchers and research administrators with expertise in statistics, survey design, survey administration, data management, data archiving, and the translation and dissemination of knowledge to researchers, policy makers, and the public.