27 November 2009
A recent article in PLoS Medicine, outlines some of the challenges of developing guidelines for data sharing in developing countries, using the Malaria Genomic Epidemiology Network (MalariaGEN) as an example [Parker et al. (2009) PloS Medicine 6(11) e1000143. doi:10.1371/journal.pmed.1000143]. The key issues that were raised in developing data release policies for MalariaGEN were in relation to the format of data, its acceptable uses and timing of release all of which have implications for local communities as well as individual researchers. Entirely open access to GWA data on individuals along with phenotypic data was considered to be inappropriate, as factors such as ethnicity may allow de-identification of data sets, especially if it related to the frequency of gene variants. With relation to MalariaGEN, an independent data access committee (IDAC) was set-up to mediate data-access, which required signing a legally binding access agreement. The data-sharing policy also allowed for a delay in data release in order to give researchers at study sites in developing countries time to analyse newly available data. This was to address the imbalance in analytic capabilities between developed and developing countries.
The authors state that there is a need for genetic researchers to work together with ethics committees, social scientist and local communities to ensure their views are respected with respect to open access data. In addition they state that ethical data release policies should also ensure that the research aspirations of developing countries are attained, this may be through mechanisms that allow data produced in developing countries to be analysed locally and ensuring that they address local health needs.