Developing Ethical Practices for Public Health Research Data Sharing in South Africa

Abstract

The abundance of South African clinical and public health research data has the potential to unlock important and valuable future advances in biomedical science. Amid increasing calls for more effective sharing of individual-level data, commitment to promote access to research data is evident within South Africa’s public research sector, but national guidance and regulation are absent. This qualitative study examined the perceptions, experiences and concerns of 32 research stakeholders about data-sharing practices. There was consensus about the utility of data sharing in publicly funded health research. However, disparate views emerged about the possible harms and benefits of sharing data and how these should be weighed. The relative dearth of policies governing data-sharing practices needs to be addressed and a framework of support developed that incentivizes data-sharing practices for researchers that are both ethical and effective.

Protection of the human research participant: A structured review

“…Policies that mandate that researchers share their data are becoming common, [18] but how does this affect consent by participants and the ownership of the data? Commentators have advocated for the protection of the rights and the responsibilities of the researcher who is generating the data, while recognising the rights of the data assessors, [14] but where do these leave the human participants who gave consent to a specific study? These are the issues that ethics committees need to consider.…”

“…There is also a need for diverse RECs from all over the world to interact and agree on what ethical research entails. [13] The abundance of research data that exists today, as well as the technology to distribute and make these data available, has enormous potential to contribute to advances in science [14] and to an interrelated and diversified health-research environment. Policies that mandate that researchers share their data are becoming common, [18] but how does this affect consent by participants and the ownership of the data?…”

“…Gremillion et al, [7] McDonald and Spiegel [13] and McAreavey and Muir [3] purposefully selected participants (the authors themselves) and undertook a thematic analysis of their narratives. Spencer et al [14] made use of snowball sampling and used thematic analysis. Silverman et al [12] purposefully selected chairpersons of RECs, and a statistical analysis of the data was done.…”

“…The REC failed to understand qualitative research; they criticise the way in which another REC approved a study, insist on changes not approved by the other REC Spencer et al [14] SA Multisite case study using interview guides and focus groups 32 participants from three sites…”

“…Spencer et al [14] conducted a multisite case study involving 32 research stakeholders, who took part in interviews and focusgroup discussions. The purpose was to describe their perceptions, experiences and concerns about data-sharing practices.…”