In order to create sustainable health systems, many countries are introducing ways to prioritize health services underpinned by a process of health technology assessment. While this approach requires technical judgments of clinical effectiveness and cost-effectiveness, these are embedded in a wider set of social (societal) value judgments, including fairness, responsiveness to need, non-discrimination and obligations of accountability and transparency. Implementing controversial decisions faces legal, political and public challenge. To help generate acceptance for the need for health prioritization and the resulting (...) decisions, the purpose of this paper is to develop a novel way of encouraging key stakeholders, especially patients and the public, to become involved in the prioritization process. (shrink)

The book considers the relationship between governance and participation, and the ways participation has been understood, framed and applied in the context of synthetic biology (SB) governance approaches. Based on fundamental questions about the scope, purpose, and responsibilities assigned to public participation activities, the authors conducted an literature review of policy reports and articles on SB governance. The authors identify key characteristics of synthetic biology, such as the complex interplay of research, engineering and IT expertise in the field, as well (...) as the challenges these characteristics pose in designing governance frameworks. Drawing on insights from a literature review, the authors contest calls for “earlier” and “more” participation on the basis that such calls fail to consider the necessary structural adjustments and resources needed for such endeavors. The brief addresses ethical questions arising in synthetic biology that could be used for developing frameworks of governance in the ongoing COVID-19 crisis and the consequent innovations in vaccine research. (shrink)