Data Sharing With Consortial Projects

MalariaGEN consortial project research involves collecting very large numbers of samples, sharing expertise and generating very large amounts of genomic and phenotypic data. Given the scale and complexity of the research enterprise, and the need to build sustainable research collaborations, it was important at an early stage to agree on policies for managing shared resources and handling genetic data.

During the inaugural meeting in July 2005, an initial proposal for managing data sharing, intellectual property and publications for consortial research was presented to the network. The proposal was refined and endorsed during this meeting, and it represents the network's first consensus on these issues. The network has subsequently developed further specific guidelines, governing, for example, how samples and data are transferred among its members and how data are to be released.

Publication downloads

• Joint Policy on Data Sharing, Intellectual Property and Publications for Consortial Projects (PDF 28.92k)
• Standard operating procedure for re-linking genomic data with local clinical databases for Consortial Projects (PDF 129.79k)
• Internal Data Management and Access Policy for Consortial Projects (PDF 275.26k)

Papers

Chokshi, D, Parker, M, and Kwiatkowski, D (2006). Data Sharing and Intellectual Property in a Genomic Epidemiology Network: Policies for Large-scale Research Collaboration Bulletin of the World Health Organization, 5:84.

De Vries J, Bull SJ, Doumbo OK, Ibrahim M, et al. 2011 Ethical issues in human genomics research in developing countries. BMC Medical Ethics 12(5). PMID 21418562

Parker M, Bull SJ, de Vries J, Agbenyega T, Doumbo OK, et al. 2009 Ethical Data Release in Genome-Wide Association Studies in Developing Countries. PLoS Med 6(11): e1000143. PMID 19956792