Testing a deliberative democracy method with citizens of African ancestry to weigh pros and cons of targeted screening for hereditary breast and ovarian cancer risk

Abstract

BackgroundDemocratic deliberation (DD), a strategy to foster co-learning among researchers and communities, could be applied to gain informed public input on health policies relating to genomic translation.PurposeWe evaluated the quality of DD for gaining informed community perspectives regarding targeting communities of African Ancestry (AAn) for Hereditary Breast and Ovarian Cancer (HBOC) screening in Georgia.MethodsWe audiotaped a 2.5 day conference conducted via zoom in March 2021 to examine indicators of deliberation quality based on three principles: (1) inclusivity (diverse viewpoints based on participants' demographics, cancer history, and civic engagement), (2) consideration of factual information (balanced and unbiased expert testimonies, participant perceived helpfulness), and (3) deliberation (speaking opportunities, adoption of a societal perspective on the issue, reasoned justification of ideas, and participant satisfaction).ResultsWe recruited 24 participants who reflected the diversity of views and life experiences of citizens of AAn living in Georgia. The expert testimony development process we undertook for creating balanced factual information was endorsed by experts' feedback. Deliberation process evaluation showed that while participation varied (average number of statements = 24, range: 3–62), all participants contributed. Participants were able to apply expert information and take a societal perspective to deliberate on the pros and cons of targeting individuals of AAn for HBOC screening in Georgia.ConclusionsThe rigorous process of public engagement using deliberative democracy approach can successfully engage a citizenry with diverse and well-informed views, do so in a relatively short time frame and yield perspectives based on high quality discussion.

Just Dissemination of Genomics-Informed Public Health Applications: Time to Deepen Our Public Engagement Approaches

“…At first glance, extensive public engagement such as deliberative democracy may seem infeasible both in time and needed resources. In 2020, with funding from NCI, we set out to test such a method for feasibility and quality of data output [23]. Briefly, we collaborated with community-based networks to engage citizens of AAn (i.e., self-identified as black or biracial including black) in southwest Georgia to be part of a "deliberation conference."…”

Assessing Facilitator Fidelity to Principles of Public Deliberation: Tutorial

“…Public deliberation is a process used to obtain informed citizen input for the development and implementation of public policies that are novel, contested, or divisive [ 1 , 2 ]. Diverse members of the public are recruited to represent competing interests and gathered to thoughtfully consider policy questions [ 3 ].…”

“…Diverse members of the public are recruited to represent competing interests and gathered to thoughtfully consider policy questions [ 3 ]. The goals of public deliberation, also referred to as consensus conferences, citizen juries, and deliberative democracy, are to provide a forum in which citizens can shape strategic decision-making and inform policies that affect them [ 1 , 2 , 4 ].…”

“…The design, methods, and models of public deliberations vary but typically consist of 3 components [ 1 , 2 , 4 , 5 ]. First, experts provide deliberants with factual, balanced, and focused information related to a public policy decision.…”

“…Public deliberation is particularly suited for controversial policy decisions in health care and bioethics [ 6 ]. However, with the growing use of public deliberations, there is a need to assess their quality [ 1 , 4 , 7 ]. Researchers recommend a variety of approaches to evaluating the quality of deliberative events.…”