The international serious adverse events consortium's data sharing model

Access through your institution Buy or subscribe 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. This is a preview of subscription content, access via your institution ACCESS OPTIONS

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SpringerLink * Instant access to full article PDF Buy now Prices may be subject to local taxes which are calculated during checkout ADDITIONAL ACCESS OPTIONS: * Log in * Learn about

institutional subscriptions * Read our FAQs * Contact customer support REFERENCES * Merton, R.K. The normative structure of science. in _The Sociology of Science_ (ed. Storer, N.W.) 267–278

(Univ. Chicago Press, Chicago, 1973) Google Scholar  * Human Genome Organisation (HUGO). Principles Agreed at the First International Strategy Meeting on Human Genome Sequencing, 25–28

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3, 113cm34 (2011). Article  Google Scholar  * Green, E., Guyer, M. & NHGRI _Nature_ 470, 204–213 (2011). Article  CAS  Google Scholar  Download references AUTHOR INFORMATION AUTHORS AND

AFFILIATIONS * American University-Washington College of Law, Washington, DC, USA Jorge L Contreras * Columbia University, New York, New York, USA Aris Floratos * International SAE

Consortium Ltd., Chicago, Illinois, USA Arthur L Holden Authors * Jorge L Contreras View author publications You can also search for this author inPubMed Google Scholar * Aris Floratos View

author publications You can also search for this author inPubMed Google Scholar * Arthur L Holden View author publications You can also search for this author inPubMed Google Scholar

CORRESPONDING AUTHOR Correspondence to Jorge L Contreras. ETHICS DECLARATIONS 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. SUPPLEMENTARY INFORMATION SUPPLEMENTARY TEXT AND FIGURES Supplementary Table 1 (PDF 28 kb) RIGHTS AND

PERMISSIONS Reprints and permissions ABOUT THIS ARTICLE CITE THIS ARTICLE 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 Download citation * Published: 09 January 2013 * Issue Date: January 2013 * DOI: https://doi.org/10.1038/nbt.2470

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