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Release of Human Genome-Wide Association Data

MalariaGEN is committed to open access as a way of promoting the scientific use of its data and encouraging research of relevance to developing countries.

Important ethical considerations need to be taken into account in the collection, storage, use, and sharing of data, including the need to provide protection for participants and communities being sampled. For these reasons, at an early stage, the network initiated an inclusive discussion of these issues involving MalariaGEN investigators, local ethics committees and funders as a key part of the development of its policy on data release. 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 requests for access to MalariaGEN data 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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Papers

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

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