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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

基本信息

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
项目类别：
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

项目摘要

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.

项目总结