Data Sharing and Data Withholding in Genetics

The overall purpose of this grant is to explore the nature, extent and consequences of data-sharing and data- withholding in academic genetics and the other life sciences. The specific aims are: (1) to empirically examine the frequency of various forms of the data sharing and withholding in genetics and the other life sciences and to compare these findings with the results from 2000; (2) to examine factors that are associated with data sharing and withholding in genetics and the other life sciences and to compare these findings with the results from 2000; (3) to explore using survey data to the functioning of existing federal policies related to data sharing and withholding in the life sciences. Our investigative team has significant experience conducting studies of science policy in general and data-sharing and withholding in particular. The study will employ qualitative and quantitative methods. The qualitative methods will include focus groups and individual interviews which will be used primarily to inform the revision of existing survey items and the development of new ones. The quantitative component will involve a large national survey of 3000 academic life scientists chosen to adequately represent both genetics researchers and other life scientists. The survey of scientists will provide data on the frequency of data-sharing and withholding behaviors, attitudes towards these behaviors and the factors that are associated with such attitudes and behaviors. The analyses will use univariate, bivariate and multivariate methods test several hypotheses as well as explore the changes the frequency of data-sharing and withholding behaviors and attitudes since our previous ELSI funded study in 2000. Results from this research will be disseminated in publications in scientific journals as well as presentations at scientific meetings and will be used to inform government policies. PUBLIC HEALTH RELEVANCE: Openness in data sharing (defining data to include the full range of research results, including materials useful for future investigation) is, or perhaps was, a major ideal in the conduct of academic science. Failure to share data is believed to have negative effects on the efficiency of science, the accuracy of the scientific record, the development of new scientific fields and on the education of the next generation of scientists. The results of this study are intended to inform institutional and national policies and procedures designed to limit data-withholding in the life sciences.