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Study examines data withholding in academic genetics
Many genetic researchers denied access to resources related to published studies

BOSTON — January 22, 2002 — While it is generally acknowledged that the progress of science depends on the free exchange of resources and knowledge, a new study finds that data, materials and information are often kept secret in academic genetics. "The ability to reproduce science is important," says Eric G. Campbell, Ph.D., of the Institute for Health Policy at Massachusetts General Hospital (MGH) and Harvard Medical School. "When people don’t share published resources, it may slow the rate of scientific advance." Campbell is first author of the report appearing in the January 23 Journal of the American Medical Association.

Campbell and his colleagues surveyed geneticists and other life scientists in the 100 U.S. universities that received the most funding from the National Institutes of Health in 1998. Data was received from a total of 1,240 geneticists and 600 non-geneticists. The survey showed that 47 percent of geneticists who asked other faculty for additional information, data, or materials relating to published scientific findings had been denied at least once in the past three years.

Overall, 10 percent of all post-publication requests for additional information in genetics were denied; 28 percent of geneticists said they had been unable to replicate published research results because of a lack of access, and a quarter had to delay their own publications because of data withholding by their peers. Despite some speculation in earlier reports that data withholding was more common in genetics, the geneticists were no more likely to report denial of their requests than were the non-geneticists.

Among the geneticists responding to the survey, 12 percent said they had denied requests from other researchers for their own information or materials. They cited many reasons for their withholding, including a lack of such resources as money and time and the need to protect their own and their colleagues’ ability to publish future research findings. "The competitive forces in academic science, the potential for commercial application of research, and resource limitations all work against the ideal of open sharing in science," say David Blumenthal, MD, MPP, director of the MGH Institute for Health Policy and senior author of the JAMA article.

Like the causes of secrecy, the solutions to the problem are also complex. The study authors note that additional resources for researchers and new policies and procedures supporting data sharing could help address this issue. "The ultimate goal is to ensure that the progress in fighting human disease via research proceeds at the fastest rate possible," Campbell explains.

The study’s other co-authors are Brian R. Clarridge, PhD, University of Massachusetts at Boston; Stephen Hilgartner, PhD, Cornell University; Neil A. Holtzman, MD, MPH, John Hopkins University; and Manjusha Gokhale, MA, and Lauren Birenbaum, both of the MGH Institute of Health Policy. The study was supported by a grant from the National Human Genome Research Institute of the National Institutes of Health.

Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $300 million and major research centers in AIDS, cardiovascular research, cancer, cutaneous biology, transplantation biology and photomedicine.

In 1994, the MGH joined with Brigham and Women's Hospital to form Partners HealthCare System, an integrated health care delivery system comprising the two academic medical centers, specialty and community hospitals, a network of physician groups and nonacute and home health services.

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