Public Deliberation in Health Policy and Bioethics: Mapping an emerging, interdisciplinary field

Abstract

For over two decades, the "deliberative turn" has rooted itself in the fields of health policy and bioethics, producing a growing body of deliberation in action and associated academic scholarship. With this growing use and study of citizen deliberation processes in the health sector, we set out to map this dynamic field to highlight its diversity, interdisciplinarity, stated and implicit goals and early contributions. More specifically, we explored how public deliberation (PD) is being experimented with in real-world health settings, with a view to assessing how well it is meeting current definitions and common features of PD. Our review provides an informative and up-to-date set of reflections on the relatively short but rich history of public deliberation in the health sector. This emerging, interdisciplinary field is characterized by an active community of scholars and practitioners working diligently to address a range of bioethics and health policy challenges, guided by a common but loosely interpreted set of core features. Current definitions and conceptualizations of public deliberation's core features would benefit from expansion and refinement to both guide and respond to practice developments. Opportunities for more frequent cross-disciplinary and theory-practice exchange would also strengthen this field.

Assessing the Quality of Deliberative Stakeholder Consultations with Pediatric Palliative Care Clinicians and Oncologists in Canada

“…Likewise, the hierarchal structures characteristic of subacute medical specialties like pediatric hematology/oncology and palliative care motivated us to conduct a separate assessment of participation equality, a subcategory of deliberative process (12) in the original De Vries framework. We rst transcribed all deliberations verbatim, and then conducted turn-taking analyses on the text transcriptions from each deliberation to achieve this.…”

“…Analytical outputs, in contrast, are those which treats participants' statements as socio-cultural products, contingent on the discursive context within which they are produced" (9). Like all deliberative democratic methods, the consultations allow researchers to unveil normative values speci c to a forthcoming policy-or standard of care in medicine-from the perspectives of key stakeholder groups, as well as make practical recommendations for implementation (10)(11)(12).…”

Creating sustainable health care systems

“…However, whatever their differences, both approaches agree that public participation is key feature of both governance structures. Yet, while there has been a tremendous drive to stimulate public participation in making these tough decisions over the last 20 years, it is apparent that the policy aspiration of public involvement has raced ahead of the establishment of an evidence base underpinning it (Abelson et al, 2013). Researchers are now seeking to address this issue (Scuffham et al, 2014) but it seems that the policy-level debate between a Humanities/Legal and Methodological/Health Economic approach at a national policy level described in the previous section is also being re-enacted at a research level in the field of public participation (Boaz et al, 2014;Burton et al, 2014).…”

An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation

“…Over the past three decades, US Federal and tribal policy makers and decision-makers in the health and bioethics sectors have increasingly sought public input into important policy questions, including questions raised by genetic research [21][22][23]. As genetic research advances and genetic testing yields medically actionable results, genetic testing will most likely increase in clinical practice, including tribal healthcare.…”