A position paper voicing the collective perspective of the global South on data sharing will be one of the outcomes of a two –day workshop under three broad themes: ethics, sustainability, and operational/technical considerations in Nairobi on the ethics of data sharing. The workshop, jointly convened by the International Network for the Demographic Evaluation of Populations and their Health (INDEPTH) and COHRED, and hosted by the Population and Health Research Centre (APHRC), aimed to identify solutions to ethical, technical and capacity-related considerations in the data sharing process.
Workshop participants expressed an overwhelmingly positive response to data sharing. The sharing of research data is considered vital and necessary for a number of reasons. Data sharing involves ethical issues that are not sufficiently addressed in existing international ethical codes. INDEPTH members, together with COHRED, thus called on the international community to close this gap, and to build the requisite capacity in low- and middle-income countries’ (LMICs) research ethics committees (RECs) to deal effectively with the ethics of data sharing. This includes informed consent and participant confidentiality, as well as obligations of secondary users to protect the integrity of the data and of the study participants.
Concerns were expressed about making the sharing of data a sustainable practice for institutions in LMICs, which will entail a number of technical and operational considerations and capacities. Obtaining the balance for sustaining the sharing of data lies in ensuring
that the means and capacity to share and actively participate in the analysis of those data are in the hands of those who generate the data and not only in those who want to analyse it.
Together with COHRED team members and a policy analyst from the Wellcome Trust, more than 30 researchers, demographers and scientists from various INDEPTH member health research centres in Africa and Asia participated in the seminar. INDEPTH is a global network of members who conduct longitudinal health and demographic evaluation of populations in low- and middle-income countries (LMICs). INDEPTH aims to strengthen global capacity for Health and Demographic Surveillance Systems (HDSS), and to mount multi-site research to guide health priorities and policies in LMICs, based on up-to-date scientific evidence.
The workshop builds on previous work by COHRED and INDEPTH in response to a statement of purpose by several research funders on sharing research data to improve public health, published in The Lancet (February 12, 2011), titled; “Sharing research data to improve public health: a perspective from the global south.” Our response to this editorial and the data sharing initiative it discusses has just been published in the latest issue of The Lancet (July 30, 2011).