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Data Withholding in Genetics and the Other Life Sciences: Prevalences and Predictors

Blumenthal, David MD, MPP; Campbell, Eric G. PhD; Gokhale, Manjusha MA; Yucel, Recai PhD; Clarridge, Brian PhD; Hilgartner, Stephen PhD; Holtzman, Neil A. MD

Research Issues at AHCs

Purpose: To better understand the variety and prevalence of data withholding in genetics and the other life sciences and to explore factors associated with these behaviors.

Method: In 2000, a sample of 2,893 geneticists and other life scientists (OLS) at the 100 most research-intensive universities in the United States were surveyed concerning data withholding and sharing. The instrument was developed and pretested in 1999. The two primary outcome measures were withholding in verbal exchanges with colleagues about unpublished research (verbal withholding) and withholding as part of the publishing process (publishing withholding). The independent variables related to the personal characteristics, research characteristics of faculty, and previous experience with data withholding.

Results: A total of 1,849 faculty responded (64%): 1,240 geneticists and 600 OLS. Forty-four percent of geneticists and 32% of OLS reported participating in any one of 13 forms of data withholding in the three previous years. Publishing withholding (geneticists 35%, OLS 25%) was more frequent than verbal withholding (geneticists 23%, OLS 12%). In multivariate analyses, male gender, participation in relationships with industry, mentors' discouraging data sharing, receipt of formal instruction in data sharing, and negative past experience with sharing were significantly associated with either verbal or publishing withholding among either geneticists or OLS.

Conclusions: Data withholding is common in biomedical science, takes multiple forms, is influenced by a variety of characteristics of investigators and their training, and varies by field of science. Encouraging openness during the formative experiences of young investigators may be critical to increased data sharing, but the effects of formal training do not appear straightforward.

Dr. Blumenthal is the Samuel O. Thier Professor of Medicine and Professor of Health Policy, and director of the Institute for Health Policy, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts.

Dr. Campbell is assistant professor of medicine, Institute for Health Policy, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts.

Ms. Gokhale is senior programmer/analyst at Policy Analysis Inc., Boston, Massachusetts.

Dr. Yucel is assistant professor of biostatistics, School of Public Health and Health Sciences, University of Massachusetts, Amherst, Massachusetts.

Dr. Clarridge is senior research fellow, Center for Survey Research, University of Massachusetts, Boston, Massachusetts.

Dr. Hilgartner is associate professor, Department of Science and Technology Studies, Cornell University, Ithaca, New York.

Dr. Holtzman is professor emeritus, The Johns Hopkins University School of Medicine and the Bloomberg School of Public Health, Baltimore, Maryland.

Please see the end of this report for information about the authors.

Correspondence should be addressed to Dr. Blumenthal, Institute for Health Policy, Massachusetts General Hospital/Partners HealthCare System, 50 Staniford St., Boston, MA 02114; e-mail: 〈〉.

© 2006 Association of American Medical Colleges