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The International Serious Adverse Events Consortium's data sharing model

Nature Biotechnology volume 31, pages 17–19 (2013)Cite this article

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To the Editor

Although the exchange of data among scientists has long been considered a norm of scientific practice1, it was not until the mid-1990s that formalized structures for sharing scientific data before publication began to emerge. Most notably, in 1996 the leaders of the Human Genome Project adopted the 'Bermuda Principles'2, which established for the first time that genomic sequence data be released to publicly accessible databases almost immediately after their generation and that intellectual property (IP) protection of such data be discouraged. The Bermuda Principles continue to shape data release practices today, both in the genomics research community and other fields3,4. Among the many genomics research projects adopting rapid prepublication data release requirements have been the International HapMap Project5, the International Cancer Genome Consortium6, the Malaria Genomic Epidemiology Network (MalariaGEN)7, the Genetic Association Information Network (GAIN)8 and the eMERGE Consortium9. Each of these projects was funded, to a large degree, by governmental and charitable sources. Though the data-sharing requirements and practices of such 'public' projects have been well-documented, data sharing in the private sector has received less attention. Nevertheless, the existence and study of private sector data-sharing initiatives is important, as the motivations leading private enterprises to share data openly are likely to be different from the motivations of public agencies and charitable foundations, and the data generated by private sector efforts may be of greater interest to other private sector researchers than publicly generated data. Two early private sector initiatives, the Merck Gene Index10 and the SNP Consortium11, have been widely cited as exemplars of private sector data sharing, but it has been a decade since these projects completed their work.

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Figure 1: iSAEC data release program.

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Authors and Affiliations

  1. American University-Washington College of Law, Washington, DC, USA

    Jorge L Contreras

  2. Columbia University, New York, New York, USA

    Aris Floratos

  3. International SAE Consortium Ltd., Chicago, Illinois, USA

    Arthur L Holden

Authors
  1. Jorge L Contreras
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  2. Aris Floratos
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  3. Arthur L Holden
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Correspondence to Jorge L Contreras.

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Competing interests

J.L.C. acts as legal advisor to iSAEC. A.F. administers the iSAEC Data Analysis and Coordination Center at Columbia University. A.L.H. is chairman and CEO of iSAEC.

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Contreras, J., Floratos, A. & Holden, A. The International Serious Adverse Events Consortium's data sharing model. Nat Biotechnol 31, 17–19 (2013). https://doi.org/10.1038/nbt.2470

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