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. Keywords: biomedical ethics, citizen science, informing science, probabilistic innovation, crowdsourcing, transparency, scientific inclusiveness Introduction Given increasing importance of disclosure and transparency issues in contemporary bioethics literature, this paper argues that at the heart of the concept of ethical practice itself is the notion of transparency toward stakeholders. Relevant to this principle is emergence of new citizen science (CS) methodologies (Bonney et al., 2009), including public participation in scientific research (PPSR) (Shirk et al., 2012), participant-led biomedical research (PLR) (Vayena & Tasioulas, 2013), and novel scientific ethics theory development such as that associated with post-normal science (Funtowicz & Ravetz, 1994). This body of literature, which extends stakeholder theory (Freeman, 1984), may be forming the basis for a new model of ethics in science, which may offer important trend insights for bioethics theory and practice. Parallel to these changes arising from citizen science movements dedicated to the democratisation of science are new ethical imperatives that have emerged in the wake of global societal crises, such as the Ebola virus disease epidemic, which have effectively "demanded the reinterpretation of long-standing ethical principles under extreme and urgent circumstances" associated with the need for real time emergency response (Fenton, Chillag, & Michael, 2015). Convergence of citizen science principles of transparency and stakeholder engagement in biomedicine is therefore occurring together with emergent recognition of the need for radically improved temporal responsiveness to urgent needs, which arguably places bioethics at the center of debates concerning these developments. Guidance on how to negotiate these changes and evolving needs requires bioethical guidance and leadership robust to extreme change and uncertainty related to technologically enabled breakthroughs in biomedical research. This paper, therefore, seeks to relate emerging citizen science movement theory to certain extreme examples of biomedical science, such as increasing global trade in human tissues and the dramatic breakthrough potential of genetic engineering. On the basis of this synthesis, useful insights are derived, and two models are developed, of (i) how divergence in industrial versus knowledge paradigms on the basis of a knowledge revolution potentially drives a new ethics of connectivity and maximized stakeholder engagement, and of (ii) 'first level' theory recommendations that are related to 'second level' practice recommendations for bioethics. Knowledge of these changes is considered particularly important in a global context vulnerable to crises such as Ebola, Zika, and dramatically increasing antibiotic resistance, for example, where such threats are one side of the bioethical engagement equation, while on the other are dramatic developments in biomedicine that might require radically increased transparency and ethical scrutiny. …