Evaluating Deliberative Democracy Approaches with Citizens of African Ancestry Regarding Population Screening for Hereditary Cancer Syndromes

项目总结 几个国家组织同意对人口进行筛查，以识别个人和 遗传性癌症综合征风险最高的家庭是有理由的。低成本遗传风险 目前有多种遗传性癌症综合征的筛查工具，包括遗传性乳腺癌 和卵巢癌(HBOC)。尽管如此，有证据表明，早期翻译的努力 这些癌症基因服务落入了代表不足的少数族裔人群手中 克服现有的差异倾向。大多数研究都集中在调整现有的 服务交付战略(例如，激活的提供商、远程遗传学)，但这些努力并没有 非洲血统(AAN)的人在接受服务方面表现出持续的改善。 研究还没有招募AAN社区来深思熟虑地考虑是否扩大 HBOC筛查符合公共利益，并有理由纠正他们的贫困 癌症后果。民主审议(DD)方法可以提供一种参与的方式 AAN社区考虑是否以及如何扩大对HBOC的筛查。我们 建议在一个区域内评估DD流程的可行性和质量 佐治亚州南部的aan社区。具体目标是：目标1：使用DD方法规划 AAAN南乔治亚州居民关于HBOC人口的公民审议会议 筛选和制定以下内容：参与者工作簿、专家演示文稿、产出 评估程序、辅导员培训规程和招聘计划。目标2：行为和 评估在佐治亚州奥尔巴尼举行的为期两天的审议会议，25人参加，以：(A)成为 了解围绕HBOC人群筛查的不同观点，(B)支持大规模和 小组讨论这些观点，以及(C)就采取何种办法达成共识 在aan社区中进行HBOC筛查(如果有的话)符合公共利益。主要结果 审议过程的质量是否如记录的小组审议所示，以及 对参与者的影响。目标2a：进行为期3个月的跟踪在线审议 小组，以深入了解发展与发展会议成果的外部有效性(可接受性 达成关于#年HBOC人群筛查的共识并与其达成一致 佐治亚州)。这项试验性研究的结果将为未来更大规模的赠款的发展提供参考。我们计划 评估在佐治亚州进行HBOC筛查的DD方法。这些努力将 包括我们获得医疗保健提供者和政策制定者的投入，以考虑是否 在AAN的社区中扩大基于人群的HBOC筛查。

PROJECT SUMMARY Several national organizations concur that population screening to identify individuals and families at highest risk for inherited cancer syndromes is warranted. Low cost genetic risk screening tools are available for several inherited cancer syndromes including heredity breast and ovarian cancer (HBOC). Nonetheless, evidence suggests that early translation efforts to get these cancer genetic services into the hands of underrepresented minority populations are not overcoming existing disparity propensities. Most research has focused on tweaking existing service delivery strategies (e.g., activated providers, telegenetics), but these efforts have not shown consistent improvement in service uptake among those of African ancestry (AAn). Research has yet to enlist communities of AAn to thoughtfully consider whether expanding HBOC screening is in the interest of the common good and warranted to redress their poor cancer outcomes. Democratic deliberation (DD) approaches can offer a way to engage communities of AAn to consider whether and how screening for HBOC should be expanded. We propose to evaluate the feasibility and quality of the DD process in a region serving large communities of AAn in south Georgia. The specific aims are: Aim 1: Use DD methods to plan a citizen deliberation conference for south Georgia residents of AAn concerning HBOC population screening and develop the following: participant workbook, expert presentations, output evaluation procedures, facilitator training protocols, and recruitment plans. Aim 2: Conduct and evaluate a 2-day deliberative conference in Albany, Georgia with 25 participants to: (a) become aware of different viewpoints surrounding HBOC population screening, (b) support large- and small-group deliberation on these viewpoints, and (c) reach consensus on what approach for HBOC screening among communities of AAn, if any, is in the common good. Primary outcomes are quality of the deliberation process as indicated by recorded small-group deliberations, and impacts on participants. Aim 2a: Conduct a 3-month follow-up online deliberation with a larger panel, to gain insight into the external validity of the output of the DD conference (acceptability of, and agreement with, the consensus reached relating to HBOC population screening in Georgia). Results of this pilot study will inform the development of future larger grant. We plan to evaluate DD approaches for HBOC screening across the state of Georgia. The efforts will include us gaining the input of health care providers and policy makers to consider whether to expand population-based HBOC screening among communities of AAn.