Data-Sharing and Data-Withholding in Genetics Research

The specific aims of this study are to: confirm and extend previous work on the prevalence and nature of data sharing and withholding in academic genetics and its subfields; investigate the factors associated with data sharing and withholding in academic genetics and its subfields; and investigate the effects of university and governmental policies on data sharing and withholding in academic genetics and its subfields. Qualitative data collection will consist of focus groups and personal interviews with genetics faculty and technology transfer officers designed to refine definitions of key terms, develop new measures of data sharing and withholding, and refine key hypotheses. Quantitative data collection will involve surveys of 3000 life science faculty chosen to over represent genetics, particularly human genetics, and a survey of technology transfer officers from 100 leading research universities. The faculty survey will explore the prevalence, nature, timing and correlates of data sharing/withholding behaviors and the effects of federal and university policies on data sharing and withholding. The survey of technology transfer officials will provide information about university policies and practices that promote or inhibit sharing. Hypotheses concerning the prevalence, nature, influences on and effects of policies on data sharing and withholding will be tested using univariate and multivariate statistical techniques. Results will be disseminated through publications in peer-reviewed journals and presentations at scientific meetings.