New ethical dilemmas arising from the growth of personal health data

Abstract

The aim of this paper is to encourage critical investigations of information governance related to personal health data. Presently, most societies have regulations that balance the protection of privacy of personal health data with the need to disclose personal data for public good. This balance seems to be challenged by recent technological and policy developments, and this paper seeks to illuminate some of these developments and the associated dilemmas that emerge. Firstly, the challenges of handling novel data types from new sources (such as smartphones, devices and sensors) is still poorly understood and regulated. Secondly, not only are medical and societal gains predicted from giving access to personal health data, but also expectations of economic value creation circulate. Thirdly, the emerging data-intensive scientific practices depend on data, both as raw material and for building the scientific toolbox (models, methodologies and repositories). Being observant on these developments can facilitate interventions into the ongoing “ethics-in-the-making” of these crucial processes.