Understanding Hispanic and Latino Perceptions on Ancestry-Targeted Inherited Cancer Screening in Georgia via Democratic Deliberation Pubblico

Abstract

Objective: Guided by the Community Empowerment Theory, this study utilized the Democratic Deliberation (DD) approach to gather informed opinions from communities of Hispanic and Latino ancestry on targeted screening for Hereditary Breast and Ovarian Cancer Syndrome (HBOC) screening in Georgia, and to identify and understand the barriers and facilitators associated with this approach.

Design: We recruited 33 Spanish-speaking Hispanic and Latino community members living in Georgia and conducted a half-day in-person democratic deliberation in Spanish. Following the viewing of pre-recorded expert testimonies, participants were asked to generate and prioritize pros and cons related to the question with group members. All group sessions were audiotaped and transcribed. We conducted thematic analysis following the empowerment theory framework to identify distinct concepts related to pros and cons. Participants were also asked to complete pre and post deliberation surveys. Survey data were analyzed using SAS to assess participant satisfaction with the deliberation process, and changes in participant community agency, self-efficacy to deliberate, perceived benefits of HBOC screening, and willingness to undergo genetic screening for HBOC.

Results: Participants generated impeding and facilitating influencers across all process levels, including person/group factors, environmental factors, and empowerment capacity. Frequently discussed concerns included fear of test results, cost, and access to testing and treatments, while common facilitating factors included improved awareness of HBOC risk and prevention, increased support and funding for the Latino community, and early detection and treatment. Deliberation survey results display overall support for the program, satisfaction with the deliberation process, and slight increases in perceived knowledge and attitudes post-deliberation.

Conclusion: Our study highlights the feasibility and effectiveness of DD for engaging Spanish speaking Hispanic/Latino community members in public health policy discussions. Study findings call for more efforts to address the community and societal level barriers and concerns. 

Table of Contents

Chapter I. Introduction

1.1 Background

1.2 Problem Statement

1.3 Significance Statement

1.4 Theoretical Framework

1.5 Purpose Statement

1.6 Research Questions

1.7 Definition of Terms

Chapter II. Review of the Literature

2.1 HBOC risk in the Latino population

2.2 Latino engagement with screening practices and disparities in HBOC prevention

2.3 Current strategies to promote health equity in HBOC cancer screening

2.4 Community engagement in cancer genomics

2.5 Conclusion

Chapter III. Student Contribution

Chapter IV. Journal Article

Appendix. Figures and Tables

Ch V. Public Health Implications

References

About this Master's Thesis

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School	Rollins School of Public Health
Department	Behavioral Sciences and Health Education
Degree	M.P.H.
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health
Parola chiave	genetic screening deliberative democracy community engagement cancer screening Latino and Hispanic health Hereditary breast and ovarian cancer
Committee Chair / Thesis Advisor	Yue Guan, Emory University Emily Lemon, University of Texas Health Science Center

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