Study title

Transcripts of interviews and focus groups with researchers and community members on experiences of and views about data sharing. As the data sharing movement gains momentum, we wanted to understand attitudes and experiences of relevant stakeholders about what constitutes good data sharing practice. We conducted fifteen interviews and three focus groups discussions involving 25 participants and found that they generally saw data sharing as something positive. Data sharing was viewed as a means to contribute to scientific progress and lead to better quality analysis, better use of resources, greater accountability, and more outputs. However, there were also important reservations including potential harms to research participants, their communities, and the researchers themselves. Given these concerns, several areas for discussion were identified: data standardization, appropriate consent models, and governance.

It is increasingly recognized that effective and appropriate data sharing requires the development of models of good data sharing practice capable of taking seriously both the potential benefits to be gained and the importance of ensuring that the rights and interests of participants are respected and that risk of harms is minimized. Calls for the greater sharing of individual level data from biomedical and public health research are receiving support among researchers and research funders. Despite its potential importance, data sharing presents important ethical, social, and institutional challenges in low income settings. This data set comprises qualitative research conducted in India, Kenya, Thailand, South Africa and Vietnam, exploring the experiences of key research stakeholders and their views about what constitutes good data sharing practice.