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

评估非洲裔公民在遗传性癌症综合征人群筛查方面的协商民主方法

• 批准号: 9893342
• 负责人: COLLEEN M MC BRIDE
• 金额: $ 18.53万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-12-03 至 2021-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9893342
• 关键词: Address; Adoption; African; Agreement; Area; Awareness; Basic Science; Caring; Clinic; Common Good; Communities; Conflict (Psychology); Consensus; Development; Evaluation; Exposure to; Family; Focus Groups; Future; Genetic Counseling; Genetic Predisposition to Disease; Genetic Risk; Genetic Services; Goals; Grant; Hand; Health Personnel; Healthcare; Healthcare Systems; Hereditary Breast and Ovarian Cancer Syndrome; Hereditary Neoplastic Syndromes; Heredity; Individual; Inherited; Knowledge; Light; Logistics; Malignant Neoplasms; Malignant neoplasm of ovary; Methods; Minority; Mutation; Outcome; Output; Participant; Pilot Projects; Policies; Policy Maker; Population; Prevention; Prevention Research; Privacy; Procedures; Process; Protocols documentation; Provider; Public Health Applications Research; Published Comment; Recommendation; Research; Resources; Risk; Screening Result; Screening for Ovarian Cancer; Screening procedure; Services; Surveys; Syndrome; Testing; Training; Translations; Trust; Underrepresented Minority; Woman; cancer genetics; cost; deliberative democracy; follow-up; genetic testing; high risk; insight; interest; malignant breast neoplasm; medical specialties; minority communities; novel; personalized screening; population based; primary outcome; psychosocial; recruit; screening; service delivery; social; symposium; tool; treatment research; uptake; variant of unknown significance

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.

项目概要 一些国家组织同意进行人口筛查以识别个人和 遗传性癌症综合征风险最高的家庭是有必要的。低成本遗传风险 筛查工具可用于多种遗传性癌症综合征，包括遗传性乳腺癌 和卵巢癌（HBOC）。尽管如此，有证据表明，早期的翻译努力是为了获得 将这些癌症遗传服务交到代表性不足的少数群体手中并不意味着 克服现有的不平等倾向。大多数研究都集中在调整现有的 服务提供策略（例如，激活的提供者、远程遗传学），但这些努力并没有 非洲血统 (AAn) 人群的服务接受率持续改善。 研究尚未让 AAn 社区认真考虑是否要扩大 HBOC 放映符合共同利益，并有必要纠正他们的穷人 癌症结果。民主协商（DD）方法可以提供一种参与方式 AAn 社区考虑是否以及如何扩大 HBOC 筛查。我们 建议评估 DD 流程在服务大型地区的可行性和质量 乔治亚州南部的 AAn 社区。具体目标是： 目标 1：使用 DD 方法来规划 为 AAn 南乔治亚州居民举行的有关 HBOC 人口的公民审议会议 筛选并制定以下内容：参与者工作簿、专家演示、输出 评估程序、协调员培训协议和招聘计划。目标 2：行为和 评估在佐治亚州奥尔巴尼举行的为期 2 天、有 25 名与会者参加的审议会议，以便：(a) 成为 意识到围绕 HBOC 人群筛查的不同观点，(b) 支持大规模和 对这些观点进行小组审议，以及 (c) 就采取何种方法达成共识 在 AAn 社区中进行 HBOC 筛查（如果有的话）是为了共同利益。主要结果 小组审议记录表明审议过程的质量，以及 对参与者的影响。目标 2a：与更大范围的人进行为期 3 个月的在线后续审议 小组，深入了解 DD 会议成果的外部有效性（可接受性 并同意就 HBOC 人群筛查达成的共识 乔治亚州）。这项试点研究的结果将为未来更大额拨款的发展提供信息。我们计划 评估佐治亚州 HBOC 筛查的 DD 方法。这些努力将 让我们获得医疗保健提供者和政策制定者的意见，以考虑是否 在 AAn 社区中扩大基于人群的 HBOC 筛查。