Research: Data Sharing

Abstract

The availability of high quality data is a foundational component of developments in health care, with one step in the research process being to develop an ethically appropriate data sharing policy that will optimize the benefits derived from a particular research project, while protecting rights and interests. The work of devising a policy would benefit from having an ethics framework available, although the impacts on research of the ongoing rapid advances in science and technology constantly bring new challenges for the ethics of data sharing. Some of these challenges are addressed in this entry, starting by making an overview of the main data sharing stakeholders and the most important settings and perspectives that frame the ethics of data sharing. The main ethics principles and positions relevant to an ethics framework are introduced, noting that the moral default position is held to be that data should be shared so as to achieve a just distribution of research benefits, although some conditions must be attached to protect and respect tangential rights and interests. A case study is then described and discussed. The central point of the concluding comments is that “data” is not meaningful object of ethics reflection if disconnected and isolated from its context.