Ethics Challenges in the Digital Era: Focus on Medical Research

Abstract

The chapter deliberates on research ethics and the unanticipated side effects that technological developments have brought in the past decades. It looks at data protection and privacy through the prism of ethics and focuses on the need for safeguarding the fundamental rights of the research participants in the new digital era. Acknowledging the benefits of data analytics for boosting scientific process, the chapter reflects on the main principles and specific research derogations, introduced by the EU General Data Protection Regulation. Further on, it discusses some of the most pressing ethics concerns, related to the use, reuse, and misuse of data; the distinction between publicly available and open data; ethics challenges in online recruitment of research participants; and the potential bias and representativeness problems of Big Data research. The chapter underscores that all challenges should be properly addressed at the outset of research design. Highlighting the power asymmetries between Big Data studies and individuals’ rights to data protection, human dignity, and respect for private and family life, the chapter argues that anonymization may be reasonable, yet not the ultimate ethics solution. It asserts that while anonymization techniques may protect individual data protection rights, the former may not be sufficient to prevent discrimination and stigmatization of entire groups of populations. Finally, the chapter suggests some approaches for ensuring ethics compliance in the digital era.