Citizen Science and Biomedical Research: Implications for Bioethics Theory and Practice

Abstract

Certain trends in scientific research have important relevance to bioethics theory and practice. A growing stream of literature relates to increasing transparency and inclusivity of populations (stakeholders) in scientific research, from high volume data collection, synthesis, and analysis to verification and ethical scrutiny. The emergence of this stream of literature has implications for bioethics theory and practice. This paper seeks to make explicit these streams of literature and to relate these to bioethical issues, through consideration of certain extreme examples of scientific research where bioethical engagement is vital. Implications for theory and practice are derived, offering useful insights derived from multidisciplinary theory. Arguably, rapidly developing fields of citizen science such as informing science and others seeking to maximise stakeholder involvement in both research and bioethical engagement have emerged as a response to these types of issues; radically enhanced stakeholder engagement in science may herald a new maximally inclusive and transparent paradigm in bioethics based on lessons gained from exposure to increasingly uncertain ethical contexts of biomedical research.

Developing the Transdisciplinary Aging Research Agenda: New Developments in Big Data

“…These citizen science movements, which effectively also extend stakeholder theory [ 42 ] into the realm of biomedicine [ 43 ], also have implications for bioethics, as some have highlighted lack of timely biomedical responses to crises such as Ebola as essentially a failure of bioethics [ 43 ]. Arguably, applying the probabilistic innovation theoretical lens, recent developments in technology have enabled radically increased data, information, knowledge collection, and analysis capabilities, and the field of bioethics needs to develop alongside these emergent capabilities [ 44 ].…”

“…Callaghan [ 43 ] considers the implications of two aspects of biotechnological advances, namely the sale of human tissues and gene transfer, for scientific ethics, suggesting that ethical frameworks might usefully draw from the tenets of postnormal science [ 41 ]. According to postnormal science perspectives, problems like conflicting arguments by climate researchers require a radical deepening of ethical scrutiny, which might be best accomplished by increased scientific transparency [ 41 ].…”