HUMAN SUBJECT PROTECTION AND DISCLOSURE RISK ANALYSIS DESCRIPTION (provided by applicant): This research program aims to answer the call for knowledge and innovation that has arisen out of recent events and inquiries about studies involving human subjects. Analyses underway now at influential public institutions such as the National Academy of Sciences and the Institute of Medicine are likely to call for new research on the risks of human research. In the area of social science research, we expect those calls for research to emphasize the reduction of disclosure risk and the creation of new responsibilities at data archives. The Survey Research Center and the Inter-university Consortium for Political and Social Research at the University of Michigan propose four closely related projects related to the protection of human subjects through disclosure risk analysis and disclosure limitation. These projects specifically address the following topics: I. Informed Consent and Perceptions of Risk and Harm in Survey Participation II. Estimation of Disclosure Risk and Statistical Methods for Disclosure Limitation III. Statistical Disclosure Control: Best Practices and Tools for the Social Sciences IV. Resources for the Secure Dissemination of Human Subjects Data The results of this program of research will be new insights into disclosure risk and its elimination, and new procedures and best practices for accomplishing these goals, along with public programs and training to disseminate the knowledge.
| Couper, Mick P; Singer, Eleanor (2013) Informed Consent for Web Paradata Use. Surv Res Methods 7:57-67 |
| Carroll, Tamar W; Gutmann, Myron P (2011) The limits of autonomy: the Belmont Report and the history of childhood. J Hist Med Allied Sci 66:82-115 |
| Couper, Mick P; Singer, Eleanor; Conrad, Frederick G et al. (2010) Experimental Studies of Disclosure Risk, Disclosure Harm, Topic Sensitivity, and Survey Participation. J Off Stat 26:287-300 |
| An, Di; Little, Roderick J A; McNally, James W (2010) A multiple imputation approach to disclosure limitation for high-age individuals in longitudinal studies. Stat Med 29:1769-78 |
| Singer, Eleanor; Couper, Mick P (2010) Communicating disclosure risk in informed consent statements. J Empir Res Hum Res Ethics 5:1-8 |
| Lazer, David; Pentland, Alex; Adamic, Lada et al. (2009) Social science. Computational social science. Science 323:721-3 |
| Couper, Mick P; Singer, Eleanor (2009) The role of numeracy in informed consent for surveys. J Empir Res Hum Res Ethics 4:17-26 |
| Singer, Eleanor; Couper, Mick P (2008) Do incentives exert undue influence on survey participation? Experimental evidence. J Empir Res Hum Res Ethics 3:49-56 |
| Gutmann, Myron; Witkowski, Kristine; Colyer, Corey et al. (2008) Providing Spatial Data for Secondary Analysis: Issues and Current Practices relating to Confidentiality. Popul Res Policy Rev 27:639-665 |
| VanWey, Leah K; Rindfuss, Ronald R; Gutmann, Myron P et al. (2005) Confidentiality and spatially explicit data: concerns and challenges. Proc Natl Acad Sci U S A 102:15337-42 |
