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

• Authors: Yue Guan, Emory University; Sarita Pathak, Emory University; Denise Ballard, Emory University; JK Veluswamy, Horizons Community Solutions; Lauren McCullough, Emory University; Colleen McBride, Emory University; Michele Gornick, Emory University
• Journal Title: FRONTIERS IN PUBLIC HEALTH
• Volume: Volume 10
• Publisher: FRONTIERS MEDIA SA | 2022-11-08, Pages 984926-984926
• Type of Work: Article | Final Publisher PDF
• Publisher DOI: http://doi.org/10.3389/fpubh.2022.984926
• Subjects: Health Sciences, Oncology; Health Sciences, Epidemiology
• Keywords: Science & Technology; Life Sciences & Biomedicine; Public, Environmental & Occupational Health; public engagement; health policy; stakeholder participation; democratic deliberation; hereditary cancer syndromes; minority groups; PUBLIC-PARTICIPATION; HEALTH-SERVICES; DISPARITIES; GENETICS; BRCA1/2; WOMEN; ETHICS; SUSCEPTIBILITY; PERSPECTIVES; INVOLVEMENT

Abstract

Background: Democratic 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. Purpose: We 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. Methods: We 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). Results: We 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. Conclusions: The 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.