||5R21CA238356-02 Interpret this number
||Mc Bride, Colleen
||Evaluating Deliberative Democracy Approaches with Citizens of African Ancestry Regarding Population Screening for Hereditary Cancer Syndromes
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.
Misinterpretation of Hereditary Breast Cancer Risk and Its Association with Information Sharing Motives among Women at Low Likelihood of Carrying a BRCA1/2 Mutation.
, McBride C.M.
, Guan Y.
Public health genomics, 2020; 23(5-6), p. 252-256.