Engaging researchers and community members on the ethics of sharing research data

The research team from the Health Research Ethics and Community Liaison Groups in the KEMRI|Wellcome Trust Research Programme were recently involved in an international collaborative project on the ethics of sharing public health and clinical research data. The collaboration involved centres in Kenya, South Africa, India, Thailand, Vietnam and Oxford, with funding from the Wellcome Trust Public Health Research Data Forum. In all sites, team used different engagement methods to learn about research stakeholders views on research data sharing, including ethics committee members, researchers, research front line staff and community members.

Two papers have been published from this work in Kilifi. The Kenya papers describe the outputs of in-depth information-sharing and engagement work with researchers and community stakeholders undertaken by Irene Jao, Francis Kombe, Salim Mwalukore, Gladys Sanga, Dorcas Kamuya, Sassy Molyneux and Vicki Marsh in Kilifi, with support from Susan Bull and Michael Parker at the Ethox Centre in Oxford.

The paper particularly highlights the importance of public engagement in developing institutional policies for data sharing, to create awareness, develop mutually acceptable processes and build trust. Where such mechanisms are put in place, research data sharing is likely to be seen as a public good.

On August 21st, the Wellcome Trust and SAGE publications launched a special edition of the Journal of Empirical Research in Human Research Ethics (JERHRE) on Public Health Research Data Sharing, on: https://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/Public-health-and-epidemiolo….


The second paper from the Kenya work has been published in PLoS ONE on https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0135545

A resource and eLearning course on Ethics and best practice in public health research data sharing has been developed from the collaborative project and set up on the Global Health Training Centre: