E.2 Data Release Policies

A guiding principle of research funded by public (governmental and charitable) organizations alike is to maximize benefit to the public while, at the same time, protecting the interests of sample donors and their relatives. The data release policies of the ICGC, and of a number of genomic projects before it, are intended to achieve these dual objectives.

Responsibilities of data producers and users

POLICY: The members of the International Cancer Genomics Consortium (ICGC) are committed to the principle of rapid data release to the scientific community.

This principle was first implemented during the Human Genome Project and has been recognized as an extremely beneficial innovation of that and subsequent large-scale genomic analyses, because it accelerates the rapid translation of output data to scientific knowledge. At a meeting in Ft. Lauderdale, FL, which was co-sponsored by the Wellcome Trust and the US National Human Genome Research Institute, in January 2003 (see meeting report at http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communic...), the concept of rapid data release by genomic sequence data producers was reaffirmed and the attendees strongly recommended adoption of the practice for other types of data produced by community resource projects (defined as projects initiated by their developers and funding agencies for the primary purpose of generating a public resource that will be used by a broad range of investigators and others to further the understanding and conquest of disease). The attendees recognized that sustaining the practice of rapid, prepublication data release requires that the interests of all involved - the data producers, data users, and funding agencies - be addressed (in the case of disease-oriented research, patients and advocacy groups are additional stakeholders). They emphasized the need for responsible behavior on the part of all parties and for incentives to induce all concerned to act in ways that will lead to the most social benefit. Data producers are recognized to have a responsibility to release data rapidly and to publish initial global analyses in a timely manner. Of equal importance is the responsible use of the data by end-users, which is defined as allowing the data producers the opportunity to publish the initial global analyses of the data, as specifically articulated at the outset of the project, within a reasonable period of time.

The members of the ICGC agree to identify the projects they support and carry out for the comprehensive genomic characterization of human cancers as a set of community resource projects. Data producers, by explicit agreement as members of the ICGC, acknowledge their responsibilities to release data rapidly and to publish initial global analyses in a timely manner. Similarly, funding agencies acknowledge their role in encouraging and facilitating rapid data release from cancer genome projects.

Data Standards for Data Releases

The ICGC will establish a well-articulated description of a first-level verification standard for each data type produced by Consortium members. ICGC members will release, to an appropriate public database, data obtained in experiments at the time that this standard is met. In most cases, it is anticipated that additional efforts for further verification and validation of the data will be carried out, but these will not delay the initial release of data. The ICGC acknowledges that releasing preliminary data may not be the first choice of the data producers. However, the ICGC members understand that such data can be useful to the broader scientific community and, ultimately, to cancer patients, so that this policy best serves the objective to enable all qualified investigators to apply the collective intellect to the study and control of cancer. All data will be accompanied by prominent caveats to notify users of the level of verification of the data and that frequent data release and updates will be forthcoming as further validation and analyses are performed.