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Grant Details

Grant Number: 1R21CA238356-01A1 Interpret this number
Primary Investigator: Mc Bride, Colleen
Organization: Emory University
Project Title: Evaluating Deliberative Democracy Approaches with Citizens of African Ancestry Regarding Population Screening for Hereditary Cancer Syndromes
Fiscal Year: 2020


Abstract

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.



Publications

Just Dissemination of Genomics-Informed Public Health Applications: Time to Deepen Our Public Engagement Approaches.
Authors: Guan Y. , McBride C.M. , Pathak S. , Gornick M.C. .
Source: Public health genomics, 2023; 26(1), p. 165-170.
EPub date: 2023-09-13.
PMID: 37703856
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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: Guan Y. , Pathak S. , Ballard D. , Veluswamy J.K. , McCullough L.E. , McBride C.M. , Gornick M.C. .
Source: Frontiers in public health, 2022; 10, p. 984926.
EPub date: 2022-11-08.
PMID: 36424974
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Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies.
Authors: McBride C.M. , Campbell G.P. , Zhao J. , Pentz R.D. , Escoffery C. , Komonos M. , Cannova K. , Byrne J.L.B. , Paris N.M. , Shepperd J.R. , et al. .
Source: PloS one, 2022; 17(2), p. e0262575.
EPub date: 2022-02-14.
PMID: 35157722
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Misinterpretation of Hereditary Breast Cancer Risk and Its Association with Information Sharing Motives among Women at Low Likelihood of Carrying a BRCA1/2 Mutation.
Authors: Zhao J. , McBride C.M. , Guan Y. .
Source: Public health genomics, 2020; 23(5-6), p. 252-256.
EPub date: 2020-10-27.
PMID: 33108784
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