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Human GWAS Data Access

The primary purpose of human genome-wide association studies (GWAS) conducted by MalariaGEN is to identify genetic variants that confer resistance or susceptibility to severe malaria; a secondary objective is to develop robust methodologies to investigate the genetic basis of common diseases in Africa and other malaria-endemic countries.

Human GWAS data generated by MalariaGEN are deposited in the European Genotyping Archive, to promote the scientific use of these data and to encouraging research of relevance to developing countries. Access to individual-level genotype data is available by application to an Independent Data Access Committee.

The use of these data is regulated by the MalariaGEN Data Release Policy. This was developed in response to the important ethical issues arising from the collection, storage, use, and sharing of human genetic data, including the need to provide protection for participants and communities being sampled. The data release policy arose from a consultative process involving investigators, local ethics committees, funders and other stakeholders. Drafts of the policy have been debated at MalariaGEN network meetings over consecutive years, and the most recent changes to the policy were made in July 2008 in response to issues raised by the MalariaGEN Independent Data Access Committee as the initial applications for access were reviewed.

Applicants who wish to access MalariaGEN data are required to complete a data access agreement. This contract requires them to commit to undertaking a number of measures designed to protect MalariaGEN participants, including restrictions on transferring or publishing primary data or attempting to identify individual participants.

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