Toronto statement on pre-publication biomedical data release

16 September 2009

A new policy statement from the Toronto International Data Release Workshop calling for pre-publication data release such as that pioneered by the publicly funded Human Genome Project, has been published in Nature. The Toronto statement [2009 Nature 461, 168-170; doi:10.1038/461168a] was produced by a group of scientists, ethicists, lawyers, and scientific journal editors who attended the workshop hosted by Genome Canada and other bodies in May 2009.

The attendees noted that the pre-publication, public release of large-scale biomedical data sets “can be profoundly valuable to the scientific enterprise and lead to public benefits” and should extend beyond genomic and proteomic data to other types of information, including metabolomic and RNA interference data and annotated clinical resources such as cohorts, tissue banks and case-control studies. The group also proposed that pre-publication data-release policies should include whole genome or mRNA sequences of reference organisms, microbial communities (microbiomes) or tissues, genome-wide association and whole-genome expression profiling data.

An editorial accompanying the statement further notes the power of ‘legacy’ data sets to generate new discoveries, including via applications and analyses of the data that the original producers could not have envisioned [2009 Nature 461, 145; doi:10.1038/461145a].

The Toronto participants noted that researchers using data made available in this manner should protect the original research subjects and avoid any ethically dubious applications. They should also respect scientific etiquette such that the originators of the data should publish the first global analysis, and be kept properly informed of (and cited by) subsequent research, calling for transparent and explicit co-operation between data producers, analysts, reviewers and journal editors. 

The group also recommended that funding bodies adopt a policy of pre-publication data release for research involving genotypic analysis, and help researchers to meet this requirement including the development of suitable protocols to ensure the consent and privacy requirements of research subjects are met. They note that “proactive engagement of funders is beneficial throughout a project” as evinced by initiatives such as ENCODE, the 1000 Genomes Project, the International Cancer Genome Consortium and the Human Microbiome Project.

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