Digital Bioethics: Contextualizing Digital Technologies and Introducing Digital Methods for Empirical Research

Abstract

Digital technologies introduce both opportunities and novel ethical issues in medical research, healthcare, and biotechnology. Moreover, discussions surrounding bioethical issues increasingly take place online, and the results of ethical deliberation and normative analysis are routinely disseminated through digital communication channels. Although empirical bioethics research has been growing over the last two decades, the field has only started to pay attention to the peculiarities of digital technologies and online spaces as well as the opportunities they offer. To foster inquiries into digital technologies, we need, on the one hand, to understand how bioethics and digital technologies relate to each other and, on the other hand, a methodological toolbox suited for this digital context. To start building such a toolbox, we can resort to other disciplines such as digital anthropology and computational social science to learn from their methodological innovations and adopt their digital methods for bioethical inquiries. In this thesis, I introduce a holistic approach to integrate digital technologies, both as research subjects and as tools, in the field of bioethics. In Chapter 1, I demonstrate the need for such an approach and provide a definition for digital bioethics, which incorporates three areas of bioethical interest: (1) the study of bioethical issues arising from digital technology applications, (2) the use of digital tools to disseminate bioethical content to stakeholders, and (3) the use of digital methods for empirical bioethics research. In Chapters 2, 3 and 4, I present case studies to exemplify what constitutes these three areas. Thereby, the focus lies on the use of digital methods in Chapter 4, which demonstrates the methods’ value for bioethics and illustrates how they integrate with normative considerations. Chapter 5 reports the development of a research platform that addresses challenges related to the digital methods case studies. The platform exhibits one avenue to support bioethics researchers in conducting digital methods research and, through that, to establish digital bioethics within the discipline. This thesis closes by discussing the case studies in the broader disciplinary context of bioethics and outlines a way forward for bioethics to go digital.