Public Engagement in Medical Policymaking: Performative or Transformative?

Abstract: Several medical policymaking bodies have stressed the importance of public engagement (PE) for their policymaking processes. It is also widely accepted that PE policymaking accrues unique, desirable benefits not attainable in non-PE medical policymaking. To the extent that these benefits are desirable, PE itself is also desirable as an instrumental good toward these higher-order goods. However, it is not clear that those pushing PE policymaking all agree on what these goods are. This is a crucial fact to keep in mind when designing the PE-element of any policymaking process, as different ends may be better actualized through different designs of the PE element.

To this end, we pursue the following two questions in this paper: (1) Why value PE in medical policymaking at all?, and (2) How should one’s answer to (1) affect the designs of PE interventions? We survey some proposed answers to (1) and argue that, to the extent that medical institutions have a duty to seek the trust of the public, and PE reliably builds such trust, PE is valuable. Thus, PE interventions should be designed around ways to maximize public trust. We observe, however, that trust can manifest a variegated character. To the extent that various segments of the public currently distrust medical policymakers to varying degrees, are differently affected by medical policy, and may fall within the scope of such policy, the character of trust sought through PE must figure into the design of said PE element in medical policymaking.

Jenny Clark Schiff – Stanford Center for Biomedical Ethics; Julia Kolak – Montefiore Einstein Center for Bioethics and Edmond & Lily Safra Center for Ethics at Harvard University; Michael Greer – Philosophy Department (CUNY) and Bioethics Program (Mount Sinai) – The Graduate Center, CUNY and Icahn School of Medicine at Mount Sinai