Ethics Preparedness for Public Health Emergencies: Recommendations From the Presidential Bioethics Commission

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

“…Whereas certain countries, including the United States (US), the United Kingdom (UK), Australia, and the Netherlands have centralised review bodies for sGT studies, these bodies have faced criticism for not addressing certain fundamental ethical issues, such as whether it is ethical to modify germ tissues, as well as for simply following conventional processes of safety and consent (Kimmelman, 2008). In the US, the Bioethics Commission, comprised of leaders in science, ethics, law, religion, engineering, and medicine, provides counsel to the President on bioethical issues, drawing inputs from the public and experts (Fenton et al, 2015). Communication of these issues through the mass media may "not only represent scientific concepts and techniques" but also "shape regulatory and ethical frame" (O'Keefe et al, 2015).…”

“…This is the central tenet of this paper; that this citizen science movement needs to be explicitly recognised and incorporated into practices to support business and medical ethical practice. Another important consideration is the speed at which these ethics bodies respond, as evidenced by the slow US response to the Ebola outbreak (Fenton et al, 2015).…”

“…Kimmelman (2008, p. 240) stresses that gene transfer "has often been characterised as permanently five years away from clinical application." Irrespective of the time frames of radical biomedical innovation, what is required is a focus on strengthening ethics preparedness (Fenton et al, 2015). Ethical challenges associated with the development of gene transfer and its application in clinical practice are primarily related to levels of risk and evidence of novel interventions, and post intervention monitoring also is necessary as side effects can emerge much later (Kimmelman, 2008).…”

“…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.…”

Critical theory and contemporary paradigm differentiation

“…Recent deliberations concerning ethics in the wake of publichealth emergencies such as the Ebola outbreak have affirmed the deliberative democratic approach with maximised real-time stakeholder engagement in research and policy making as well as the need for proactive democratic deliberation in advance of such events (Fenton, Chillag & Michael 2015). The rights of populations to have scientific findings fully disclosed and to have maximised transparency concerning developments that influence them in an era of rapid technological developments, including for example areas such as genetic engineering (Kimmelman 2008), have important implications for scientific assumptions and notions of the incommensurability of paradigms.…”