Data Sharing: Perspective of the Juvenile Diabetes Research Foundation International


Collaboration and data sharing are increasingly important as biomedical research becomes more complex and as scientists and physicians come closer to developing novel treatments for many human diseases. The Juvenile Diabetes Research Foundation International (JDRF) views data sharing, or knowledge sharing, as a critical step to accelerating the pace of research toward our mission: to find a cure for diabetes and its complications. As a funding organization, JDRF attempts to encourage knowledge sharing between scientists by fostering and supporting collaboration. JDRF is committed to the publication and dissemination of all information and materials developed using JDRF resources. All recipients of JDRF awards must agree to this principle and must take steps in order to facilitate availability of data and samples.

In the presented case study, JDRF would apply the general guideline that scientists share data and resources generated from JDRF-funded research once the primary laboratory has published the information in a peer-reviewed scientific journal. This guideline does not pertain to preliminary information presented at a scientific meeting prior to publication of the final data set. In the specific case, it is at the discretion of Montgomery and Smith whether to hold their data and antibody until they have published the final data set.

It is appropriate, however, for scientists to approach one another to initiate collaborations. If Jones wants access to the data and antibody prior to publication, she must be honest, yet discrete, to Montgomery and Smith about her intentions in seeking the information and resource. She should collaborate with Smith and Montgomery. Once the collaboration is formed, Smith and Montgomery should receive proper recognition commensurate with their input on the project. If Jones?s study could not occur without their antibody and data, then Smith and Montgomery should receive primary authorship on any publication. If all other attempts fail, it is also appropriate to approach the funding organization with one?s ideas. However, all parties must be willing to share their data and resources for any collaboration to be successful.

If Jones contacted JDRF about the data presented by Montgomery and Smith, JDRF would encourage the two groups to collaborate. JDRF would encourage collaboration whether it was the more established investigator, Jones, or the junior faculty member, Montgomery, who initiated the discussion. In either case, it is likely that more could be gained from the two labs working together than if they were to work on the problem separately. JDRF would also encourage Montgomery to prepare his results for publication. If the two groups agree to collaborate and require additional funds, they would have to submit a request or application to JDRF that would be reviewed by our peer review and lay review committee. The institutions of the principal investigators would have to arrange and agree on the specific details of Materials Transfer Agreements and other documents as necessary to execute the sharing of scientific resources. The institutions would also need to work out issues related to intellectual property, taking into account JDRF?s policy on intellectual property and royalties.

JDRF is committed to the publication and dissemination of all information and materials developed through any grant award mechanism, including fellowships, regular grants, or our large Center awards. To foster collaboration and data sharing, JDRF has established 29 cross-departmental research centers to provide a multidimensional approach to the problem of Type 1 diabetes. A JDRF Center is organized as a multi- and interdisciplinary effort and may include investigators from different fields, different departments, different institutions, and indeed different countries. All investigators in a Center work together with a special focus on the translation of basic research into clinical application. Thus, basic immunologists may work with stem cell biologists and transplant surgeons. JDRF also supports efforts to organize consortia of scientists interested in sharing data and resources in a coordinated approach. A particularly successful example is the JDRF-supported network of Islet Distribution Centers. By encouraging data and knowledge sharing, we hope to facilitate finding a cure for diabetes and its complications as quickly as possible.

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