Ethical and legal governance of health-related research that use digital data from user-generated online health content

Abstract

Advances in information and communication technologies have enabled health care users and providers to share health information online thus generating contents, which may be used for health-related research. In addition, the data may be used for health care decision-making thus blurring the boundaries between health care and research particularly with the repurposing of data for other uses. This paper discusses the ethical and legal concerns that emerge from using digital data from user-generated online health content for health-related research. It analyses the nature of digital health data from user-generated online content and considers the extent to which its use can be governed through the current regulatory and ethical frameworks. It then highlights the strengths and weaknesses of these frameworks and proposes strategies that can be used to protect data subjects’ privacy while facilitating research in an ethical manner.