Ethical issues in data sharing

MalariaGEN network meeting, June 2007, Hinxton, UK. Photo credit: MalariaGEN.

There are many practical and ethical considerations involved in sharing data across a global network comprising investigators and institutions in countries with great disparities in funding and infrastructure. This is particularly the case for human genetic and genomic data, where it is important to promote the scientific use and social value of these data in a way that also preserves privacy and safeguards the interests of the communities involved.

MalariaGEN’s human consortial projects involve the collection of tens of thousands of samples, sharing expertise, generating genome-wide data on millions of genetic variations, and curating clinical data (for example, gender, ethnicity, and parasitaemia) on severe malaria phenotypes. Important ethical considerations need to be taken into account in the collection, storage, use, and sharing of 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 MalariaGEN meeting in July 2005, an initial proposal for managing data sharing, intellectual property and publications for our human 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 released.

Learn more about our approach to data sharing.

Documents

Publications

Parker M, Kwiatkowski DP. The ethics of sustainable genomic research in Africa>. Genome Biology. 2016 17:44 DOI: 10.1186/s13059-016-0914-3.
De Vries J, Bull SJ, Doumbo OK, Ibrahim M, et al. Ethical issues in human genomics research in developing countries. BMC Medical Ethics. 2011: 12(5). doi: 10.1186/1472-6939-12-5.
Parker M, Bull SJ, de Vries J, Agbenyega T, et al. Ethical data release in genome-wide association studies in developing countries. PLoS Med. 2009 Nov;6(11):e1000143. doi: 10.1371/journal.pmed.1000143. Epub 2009 Nov 24.
Chokshi, D, Parker, M, and Kwiatkowski, D. Data sharing and intellectual property in a genomic epidemiology network: policies for large-scale research collaboration. Bulletin of the World Health Organization (WHO). May 2006: 84(5).