Is deliberative democracy possible during a pandemic? Reflections of a bioethicist.

Abstract

In 1985, Governor Mario Cuomo established the New York State Task Force on Life and the Law to provide guidance on issues at the interface of medicine, ethics and the law. During its tenure, the Task Force has been the leading state-based commission in this space producing landmark reports on end-of-life care, physician-assisted suicide, genetic testing, newborn care, brain death, surrogate decision making, assisted reproduction, and ventilator allocation in pandemic flu. These documents have informed state policy, both regulatory and statutory, and had an outsized influence on policy deliberation nationwide. Despite this notable provenance, the Task Force was missing in action during the coronavirus disease 2019 (COVID-19) pandemic. Although individual members were sought for consultation, the Task Force as a whole did not meet during the entirety of the pandemic. This article will explore the consequences of this omission and argue that as a deliberative body, the Task Force should have been an essential component of statewide debate on questions of crisis standards of care, health equity, and vaccine allocation. The COVID-19 experience exposed weaknesses in New York's process of deliberative democracy in response to the pandemic. A state with a distinguished history in this interdisciplinary space was left behind with the views of important constituencies left unheard and communities unserved. Better apprehending how this abdication of responsibility occurred. Public Significance StatementThis has public policy significiance as it can help prevent its recurrence in the future and lead to more trustworthy, inclusive and effective public health and health law governance.

Narrative incongruence in pandemic local governance: Mayors perform responsibility as communities demand responsiveness

“…From a practical perspective, similar inquiries may inform the design of better online civic spaces for digitally mediated governance (Li et al, 2020; Rufai & Bunce, 2020). Such insights help resolve potential inequities in current arrangements for facilitating deliberative democracy and enrich open, meaningful participation in public discourse, both in crisis and beyond (Fins, 2021; Reicher & Stott, 2020).…”

The mentality of dieability/killability: Reflections on the special issue on law, medicine, and bioethics.

“…Democracy is undermined by the idea of dieability, and deliberative democracy is not a bulwark against dieability. Although I appreciate Fins (2021) informative analyses of the advantages of deliberations by medical experts in the context of the pandemic, I would like to push the reflections further. Based on seemingly reasonable deliberations within the logic of the existing system, one still may conclude that certain people are dieable.…”

Advancing a phenomenology of law of migration and displacement: Centering recognition of persons and communities migrating and their lived experience of suffering.

“…The COVID pandemic has wrought radical changes in the global world, threatening global health security (Gostin, 2021) and the pillars of participatory democracy (Fins, 2021), heightening consciousness of social suffering across global societies, and calling us to reflect more deeply at this point in our human history upon the social imaginaries shaping the ethical norms that guide policy decisions, as well as decisions we make as persons, members of communities, and global citizens. In these contexts, the COVID pandemic constitutes an unprecedented political and moral upheaval in our times, uprooting us from what we may have naively thought to be settled historical and ethical moorings, and thrusting us into uncharted realms of human experience.…”