Project IV: Resources for the Secure Dissemination of Human Subjects Data

PRINCIPAL INVESTIGATOR
James W. McNally
NACDA Project Director and Senior Research Associate/Archivist
Inter-university Consortium for Political and Social Research
University of Michigan

CO-INVESTIGATOR
Myron P. Gutmann
Director and Senior Research Scientist
Inter-university Consortium for Political and Social Research
Institute for Social Research
University of Michigan

Project Summary

This research project will disseminate tools and information to enhance the understanding disclosure analysis. These tools will address the growing need and demand for direct access to information, knowledge and innovative applications that will allow researchers to respond to the complex changes ongoing in the use of studies that involve human subjects, particularly as this pertains to secondary research. The open disseminating of the information developed as a result of the broader Disclosure Program Project to the research community will represents a key outcome to the overall project and will provide a lasting contribution to research on disclosure and confidentiality. The Dissemination Project will build upon. not only the strengths of the research resulting from the related disclosure projects, it will also draw upon the strengths of The Inter-university Consortium for Political and Social Research (ICPSR) and the Survey Research Center (SRC) as recognized leaders in the training of professional researchers, the generation of innovative studies and the dissemination of information. The results of this project will simultaneously synthesize finding from other aspects of the Disclosure Program Project and seek supplemental and original tools that will train researchers and broadly disseminate research findings on disclosure risks. These new insights into disclosure risk and its elimination will result in new procedures and best practices to accomplish the goal of increased confidentiality and the protection of survey respondents.

Specific Aims of the Project

This research project will develop and implement dissemination tools to enhance the understanding of disclosure risk and disclosure analysis in the social science research and policy communities. These tools will address the growing need and demand for knowledge and innovative applications to assist researchers and IRBs in assessing disclosure risk and ensuring the protection of human subjects.

The open dissemination of the information developed as a result of the Projects 1,2, and 3 will be a key outcome for the overall research program and will provide a lasting contribution to research on disclosure and confidentiality. While some form of information sharing is a normal part of any successful research undertaking, the proactive dissemination program proposed here goes well beyond the publication of research results in peer-reviewed publications. It is vitally important for the future success of social science research that the insights, methods, and tools produced by Projects 1, 2, and 3 reach the largest possible audience. As the research cited in the description of Project 3 attests, a substantial disconnect exists between knowledge about disclosure risk analysis and its actual practice, and we seek through our unique Dissemination Program to bridge this gap by employing effective information dissemination techniques to publicize and spread our research findings and tools.

The Dissemination Project will build upon the strengths of the research of the related disclosure projects as well as the strengths of the Inter-university Consortium for Political and Social Research (ICPSR) and the Survey Research Center (SRC). both leaders in the training of professional researchers, the conduct of innovative research, and the dissemination of information. This project will synthesize findings from other aspects of the Disclosure Risk Analysis Project and develop supplemental and original tools that will train researchers, survey practitioners, and policy-makers, and also disseminate research findings about disclosure risks.

To accomplish the overarching goal of assisting the research community in meeting emerging challenges to the protection of human subjects' privacy, we will initiate a series of focused programs, training seminars, and information distribution systems designed to promulgate the-knowledge developed through the four components of the program project.