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: 10064138
• 负责人: COLLEEN M MC BRIDE
• 金额: $ 21.67万
• 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 2022-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10064138
• 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; Health Services Research; 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 Groups; 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; Surveys; Syndrome; Training; Translations; Trust; Underrepresented Minority; Woman; aggressive breast cancer; black women; cancer genetics; cost; deliberative democracy; distrust; follow-up; genetic testing; high risk; insight; interest; malignant breast neoplasm; medical specialties; minority communities; novel; personalized screening; population based; primary outcome; psychosocial; racial disparity; recruit; screening; service delivery; service uptake; social; symposium; testing uptake; 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.

项目摘要 几个国家组织一致认为，人口筛查，以确定个人和 遗传性癌症综合征风险最高的家庭是必要的。低成本遗传风险 筛查工具可用于几种遗传性癌症综合征，包括遗传性乳腺癌， 卵巢癌（HBOC）尽管如此，有证据表明，早期的翻译努力，以获得 这些癌症遗传服务到代表性不足的少数群体手中， 克服现有的不平等倾向。大多数研究都集中在调整现有的 服务交付战略（例如，激活提供者，远程遗传学），但这些努力没有 在非洲血统的人中，服务吸收率持续提高。 研究还没有招募社区的AAn深思熟虑地考虑是否扩大 HBOC筛查符合共同利益，并有必要纠正他们的穷人 癌症结果。民主审议（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 建议评估在一个服务于大城市的区域内发展和设计进程的可行性和质量， 格鲁吉亚南部的AAn社区。具体目标是：目标1：使用DD方法规划 关于HBOC人口的南格鲁吉亚居民公民审议会议 筛选并制定以下内容：参与者工作手册、专家介绍、产出 评估程序、促进者培训协议和招聘计划。目标2：行为和 评估在格鲁吉亚的奥尔巴尼举行的为期两天的审议会议，有25名与会者参加，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 就这些观点进行小组讨论，以及（c）就采取何种办法 在AAn社区中进行HBOC筛查，如果有的话，是为了共同利益。主要结局 小组讨论记录所显示的讨论过程的质量，以及 影响参与者。目标2a：进行为期3个月的后续在线审议， 小组，以深入了解DD会议输出的外部有效性（可接受性 关于HBOC人群筛查达成的共识， 格鲁吉亚）。这项试点研究的结果将为今后更大规模赠款的制定提供信息。我们计划 评估格鲁吉亚州HBOC筛查的DD方法。这些努力将 包括我们获得卫生保健提供者和政策制定者的意见，以考虑是否 扩大以人群为基础的HBOC筛查在社区之间的AAn。

项目成果

Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies.

• DOI: 10.1371/journal.pone.0262575
• 发表时间: 2022
• 期刊: PloS one
• 影响因子: 3.7
• 作者: McBride CM;Campbell GP;Zhao J;Pentz RD;Escoffery C;Komonos M;Cannova K;Byrne JLB;Paris NM;Shepperd JR;Guan Y
• 通讯作者: Guan Y

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.

• DOI: 10.3389/fpubh.2022.984926
• 发表时间: 2022
• 期刊: FRONTIERS IN PUBLIC HEALTH
• 影响因子: 5.2
• 作者: Guan, Yue;Pathak, Sarita;Ballard, Denise;Veluswamy, J. K.;McCullough, Lauren E.;McBride, Colleen M.;Gornick, Michele C.
• 通讯作者: Gornick, Michele C.

Misinterpretation of Hereditary Breast Cancer Risk and Its Association with Information Sharing Motives among Women at Low Likelihood of Carrying a BRCA1/2 Mutation.

对携带 BRCA1/2 突变可能性较低的女性的遗传性乳腺癌风险及其与信息共享动机的关联的误解。

• DOI: 10.1159/000511131
• 发表时间: 2020
• 期刊: Public health genomics
• 影响因子: 1.7
• 作者: Zhao,Jingsong;McBride,ColleenM;Guan,Yue
• 通讯作者: Guan,Yue