Science has a secrecy problem, and it may be escalating. More and more genetics researchers are refusing to share results, reagents, and other materials with colleagues, a recent survey has found. At the same time, advisory and funding organizations are grappling with the best way to ensure that the appropriate data are made available to other researchers.
Those are some of the messages from a study led by David Blumenthal, M.D., chief of the Institute for Health Policy at Massachusetts General Hospital in Boston, and colleague Eric Campbell, Ph.D., instructor of health policy there. They examined the data-sharing habits of 1,240 geneticists and 600 other life scientists from universities that receive the most funding from the National Institutes of Health.
Reporting in January in the Journal of the American Medical Association, Blumenthal and Campbell found that 84% of the geneticists said they had requested data from other researchers in the past 3 years but that nearly half47%said that at least one request had been turned down. Twenty-eight percent said they could not confirm published research because they were denied additional information.
"We find that a large percentage of scientists cant replicate published results because they cant get access to materials related to that researchand that raises issues to consider," Campbell said. "The replication of published results represents one of the pillars of the scientific endeavor to maintain the integrity of research. If you cant get access to something that will enable you to verify someones claim of truth, you cant know if it is the truth. Replication and peer review are the two quality checks in our scientific system. If one is hobbled, we have a problem."
Of those surveyed, 35% thought that other scientists were less willing to share than a decade ago. About one-half of those surveyed said the situation remained the same, while only 14% said they thought it had improved.
"The magnitude of the problem is difficult to know and difficult to quantify," Campbell acknowledged.
He pointed out that secrecy regarding data can happen at several points. Delaying publication because of patent issues or an industry funding sources review of the data, not presenting results at conferences, and not sharing data after publication are a few examples.
"When a number of scientists report that limited access and sharing hurts their efforts to educate students, leaving them without access to the latest in the field, that could affect the future of science," Campbell said. "A number of scientists said they abandoned promising areas of research because they couldnt get access to materials from other people."
Campbell and Blumenthals survey highlights how prevalent secrecy is, said Steven A. Rosenberg, M.D., Ph.D., chief of surgery at the National Cancer Institute, who has also written about the issue. "Until we recognize and admit how much of a problem this is, we wont be able to do anything about it," Rosenberg said. "This represents a substantial impediment to progress in biomedical research."
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Corporate Influence
During the last 2 decades or so, the combination of rising competition for federal funding and the influx of private funding, mostly through the pharmaceutical and biotechnology industries, has dramatically altered the research landscape. Rosenberg and others contend that the increasing financial interest of the corporate world in science has had a dramatic impact on researchfor better, and sometimes for worse.
"Secrecy has escalated in the last decade as funding from biotech and pharmaceutical companies has become a much more important part of the funding of biomedical research," Rosenberg said. "As more of the research is fundedif not doneat pharmaceutical and biotech firms, the ethics of business begin to intrude on the ethics of medicine. I see that as a potential problem and one that is not abating."
But not everyone sees it that way. David Ledbetter, Ph.D., chairman of human genetics at the University of Chicago, pointed out that, although the private sectors interest and involvement in funding genetics-related research has grown exponentially, it may not matter in terms of data sharing.
While "the feeling is that in general theres an increase in this sort of [secrecy] behavior, Im not sure what impact it has had on the field," Ledbetter said. "Geneticists certainly are aware of the potential commercial value of their work. Perhaps some measure of secrecy is needed to protect investments."
But surgical oncologist David Euhus, M.D., argued that, in reality, if there is no commercial interest in a persons work, it may not progress very far. "A specific kinase inhibitor may help thousands of patients, but it doesnt help anyone if it languishes at NIH," said Euhus, who is an associate professor of surgery at the University of Texas Southwestern Medical Center in Dallas.
He pointed to the anticancer drug Gleevec as an example of a drug made possible by its corporate support. Projects with commercial interest progress more rapidly, and ultimately, benefit more people, he said.
And such commercial interest inevitably generates competition. The international competition to identify the first breast cancer gene, BRCA1, is an example. "The discovery brought with it the potential for millions of dollarsfrom patent and testing rights to future grants, publications, academic and scientific prestige, and even speaking engagements," Campbell said. "When groups are competing for limited resourcesfunding and journal spaceyoull have secrecy."
Rules for Sharing
In the meantime, organizations and funding agencies are trying to determine the best way to implement requirements on sharing data.
Cech, who is the president of the Howard Hughes Medical Institute in Chevy Chase, Md., chairs a National Academy of Sciences committee that met in February to develop rules governing how scientists should share data. The NAS committees final recommendations are expected later this summer.
The committee looked at what to do with the recent availability of large databases, such as sequence databases and gene expression databases, and publications based on them. "Our committee is addressing reluctance to share data that has been published and is required to be able to validate or falsifyand extendthe published work," he said.
"It makes a difference whether the database is the result announced in the paper or part of the pathway to get an independently verifiable result," he said. "The standard under discussion is, if the database is an intrinsic part of the argument and you cant evaluate the work without the database, but the database is too big to be included in the publication, then should it be available on the same basis to academic and commercial users for free, similar to the way it would be if it were in the publication?"
One of the examples discussed was the separate publication of the human genome sequence last year by a private Rockville, Md.-based company, Celera Genomics Inc., and a public international consortium that was federally funded. The latter made its data public; Celera only allowed access to data through a company-controlled Web site.
The University of Chicagos Ledbetter pointed out that the NIH has always had guidelines for sharing reagents and material, though they have not been enforced as well as they could be. He said he thinks that granting agencies should play a role in developing guidelines for sharing as part of the grant process. The NIH, he noted, has said it would make some funding available to facilitate sharing. The agency recently announced guidelines for data sharing, which at press time, were open to public comment. (See News, April 17, p. 555).
It is unclear how increasing competition in research will affect secrecy in science, but both Ledbetter and Rosenberg suggested that the funding agencies play a role in ensuring that the appropriate data are shared with the scientific community.
"We have to find better waysbetter regulationsto protect the intellectual property rights of companies and allow the sharing of information," Rosenberg said. "Granting agencies and journals should make as a condition that no information . . . [is] kept confidential in order to receive funds or publishing results."
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