HIV Surveillance, Community Engagement, and Genetic Data Collection Fears: An Ethical Framework for Public Health Intervention Open Access

Abstract

Data-based surveillance systems have been operationalized in public health for centuries. Recent advancements in genetic sequencing and technology have allowed for more widespread, comprehensive tracking, recognition, and analysis of the spread of disease, however not without pushback. The public health response to the HIV/AIDS epidemic that began in the 1980s ignited fierce debates over privacy, autonomy, stigma, and governmental authority that still persist today. This paper presents an examination of the ethical issues surrounding HIV molecular cluster detection and response, including fears and misunderstandings about viral genomic data collection, the impact of community engagement in the planning and design of interventions, and the tension between clinical and public health ethics approaches. It outlines the power of restorative justice techniques to help mend divisive relationships between agencies and communities through the recognition of previous wrongdoing, as well as the importance of evidence-based dissemination and implementation science techniques.

Building on work from ten frameworks within public health ethics, community engagement, surveillance, and genomic data collection, the culminating final product will be an integrated community-inclusive framework for use by professionals and community members to guide and evaluate the planning, design, and implementation of successful public health interventions. To demonstrate its practical application, examples from HIV public health surveillance are integrated into the framework; a brief discussion of the application to a non-HIV intervention – the recent 2019 novel coronavirus (COVID-19) outbreak – is presented, as well. Intended to call attention to common ethical issues within collaborative project planning and to streamline the evaluation of each stage of intervention design, the success of the presented framework will ultimately be determined by its practical use.

Table of Contents

Table of Contents 

INTRODUCTION .......................................................................................................................................................................... 1 

TERMINOLOGY ..................................................................................................................................................................................................2 

BACKGROUND ............................................................................................................................................................................. 3 

HISTORY OF HIV/AIDS AND SURVEILLANCE .............................................................................................................................................3 

Initial Response to an Aggressive Disease ................................................................................................................................... 4 

Continued Management of Disease Impacts ............................................................................................................................... 6 

Policy Changes, Funding, and Monitoring ................................................................................................................................... 8 

Technological Advancements ........................................................................................................................................................ 10 

CDC HIV SURVEILLANCE PROGRAMS ....................................................................................................................................................... 11 

NHSS Case Surveillance .................................................................................................................................................................... 12 

HIV Cluster Detection and Outbreak Response ....................................................................................................................... 12 

Medical Monitoring Project (MMP)............................................................................................................................................. 12 

National HIV Behavioral Surveillance (NHBS) ....................................................................................................................... 13 

COMMUNITY ENGAGEMENT ............................................................................................................................................... 14 

A NEED FOR MORE COMMUNITY ENGAGEMENT ..................................................................................................................................... 15 

CONFLICTING FEELINGS ON GENOMICS.......................................................................................................................... 17 

THE SCIENCE OF CLUSTER DETECTION ..................................................................................................................................................... 19 

DATA FOR NON-PUBLIC HEALTH USE ...................................................................................................................................................... 21 

Law Enforcement................................................................................................................................................................................ 22 

Immigration Concerns ...................................................................................................................................................................... 25 

RESTORATIVE JUSTICE ......................................................................................................................................................... 27 

BRIDGING THE DISCONNECTS IN PERSPECTIVES ..................................................................................................................................... 28 

RECOGNITION OF WRONGDOING AND REBUILDING TRUST ................................................................................................................... 30 

DISSEMINATION AND IMPLEMENTATION SCIENCE ................................................................................................... 32 

DISSEMINATION VS. IMPLEMENTATION .................................................................................................................................................... 33 

OVERCOMING BARRIERS THROUGH D&I METHODS .............................................................................................................................. 34 

BIOETHICS VS. PUBLIC HEALTH ETHICS ........................................................................................................................ 35 

VIEWPOINT 1: SEPARATION OF BIOETHICS AND PUBLIC HEALTH ETHICS ......................................................................................... 37 

VIEWPOINT 2: MERGING BIOETHICS AND PUBLIC HEALTH ETHICS .................................................................................................... 38 

VIEWPOINT 3: COMPROMISING BETWEEN BIOETHICS AND PUBLIC HEALTH ETHICS ..................................................................... 39 

DIFFERING PERSPECTIVES ON HIV/AIDS RESPONSE ........................................................................................................................... 40 

UTILITARIANISM VS. SOCIAL JUSTICE PERSPECTIVE ................................................................................................ 41 

INTEGRATED ETHICAL FRAMEWORK ............................................................................................................................. 43 

PUBLIC HEALTH ETHICS FRAMEWORKS ................................................................................................................................................... 45 

Nancy E. Kass – “An Ethics Framework for Public Health”, 2001 ................................................................................... 46 

Review of the Framework .................................................................................................................................................................................. 49 

James F. Childress, et al. – “Public Health Ethics: Mapping the Terrain”, 2002 ......................................................... 50 

Review of the Framework .................................................................................................................................................................................. 53 

Georg Marckmann, et al. – “Putting Public Health Ethics Into Practice: A Systematic Framework”, 2015 ... 54 

Review of the Framework .................................................................................................................................................................................. 59 

COMMUNITY ENGAGEMENT FRAMEWORKS ............................................................................................................................................. 61 

Brunton et al. – “Narratives of community engagement: a systematic review-derived conceptual framework for public health interventions”, 2017 ................................................................................................................ 62 

Review of the Framework .................................................................................................................................................................................. 66 

De Weger et al. – “Achieving successful community engagement: a rapid realist review”, 2018 ....................... 67 

Review of the Framework .................................................................................................................................................................................. 72 

SURVEILLANCE FRAMEWORKS ................................................................................................................................................................... 73 

Klingler et al. – “Ethical issues in public health surveillance: a systematic qualitative review”, 2017 ............ 74 

Review of the Framework .................................................................................................................................................................................. 78 

Pounder – “Nine principles for assessing whether privacy is protected in a surveillance society”, 2008 ........ 79 

Review of the Framework .................................................................................................................................................................................. 84 

Désy, Filiatrault, and Laporte – “A Tool for Ethical Analysis of Public Health Surveillance Plans”, 2012 ...... 85 

Review of the Framework .................................................................................................................................................................................. 88 

GENOMIC AND HEALTH DATA COLLECTION FRAMEWORKS .................................................................................................................. 88 

Xafis et al. – “An Ethics Framework for Big Data in Health and Research”, 2019 .................................................... 90 

Review of the Framework .................................................................................................................................................................................. 96 

Schairer et al. – “Trust and Expectations of Researchers and Public Health Departments for the Use of HIV Molecular Epidemiology”, 2019 ........................................................................................................................................... 97 

Review of the Framework ............................................................................................................................................................................... 101 

COMMUNITY-INCLUSIVE INTEGRATED FRAMEWORK .......................................................................................................................... 102 

APPLYING THE FINALIZED INTEGRATED FRAMEWORK ....................................................................................................................... 106 

Incorporating Restorative Justice and D&I Science ........................................................................................................... 116 

Non-HIV Public Health Surveillance Application of the Framework: COVID-19 .................................................... 119 

CONCLUSION ........................................................................................................................................................................... 121 

REFERENCES ........................................................................................................................................................................... 123 

APPENDIX A – LIST OF ALL ETHICAL PRINCIPLES AND CONCEPTS FROM ALL FRAMEWORKS ............... 135 

APPENDIX B – FRAMEWORK SUB-ELEMENTS SELECTED FOR FINAL FRAMEWORK, BY THEME, WITH SOURCES ...................................................................................................................................................................... 138 

Table of Figures 

FIGURE 1. TIMELINE OF MAJOR SURVEILLANCE MILESTONES AND CDC PROGRAMS IN CONTEXT ....................................................... 13 

FIGURE 2. RELATIONSHIP BETWEEN MOLECULAR CLUSTERS, TRANSMISSION CLUSTERS, AND RISK NETWORKS (DHAP 2018, 8) .................................................................................................................................................................................................. 20 

FIGURE 3. INTERSECTION OF BIOETHICS AND PUBLIC HEALTH ETHICS .................................................................................................... 40 

FIGURE 4. INTERSECTION OF UTILITARIANISM AND SOCIAL JUSTICE ........................................................................................................ 42 

FIGURE 5. REPRESENTATION OF FRAMEWORK ELEMENT FLOWCHART FOR DEVELOPMENT OF FINAL SYNTHESIZED FRAMEWORK ............................................................................................................................................................................................ 45 

FIGURE 6. EXAMPLE OF FRAMEWORK ELEMENT SELECTION PROCESS .................................................................................................. 104 

FIGURE 7. FRAMEWORK ELEMENT FLOWCHART FOR DEVELOPMENT OF FINAL SYNTHESIZED FRAMEWORK ................................. 105 

Table of Tables 

TABLE 1. KASS, 2001 ....................................................................................................................................................................................... 50 

TABLE 2. CHILDRESS ET AL., 2002 ................................................................................................................................................................ 54 

TABLE 3. MARCKMANN ET AL., 2015 ............................................................................................................................................................ 60 

TABLE 4. ALIGNMENT OF ETHICAL NORMS IN IDENTIFIED PUBLIC HEALTH FRAMEWORKS .................................................................. 60 

TABLE 5. BRUNTON ET AL., 2017 .................................................................................................................................................................. 67 

TABLE 6. DE WEGER ET AL., 2018 ................................................................................................................................................................ 73 

TABLE 7. KLINGLER ET AL., 2017 .................................................................................................................................................................. 79 

TABLE 8. POUNDER, 2008 .............................................................................................................................................................................. 85 

TABLE 9. DÉSY, FILIATRAULT, AND LAPORTE, 2012 ................................................................................................................................. 88 

TABLE 10. XAFIS ET AL., 2019 ....................................................................................................................................................................... 97 

TABLE 11. SCHAIRER ET AL., 2019 ............................................................................................................................................................ 102 

TABLE 12. HIV MOLECULAR CLUSTER DETECTION-SPECIFIC APPLICATION OF NOVEL FRAMEWORK .............................................. 107 

About this Master's Thesis

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School	Laney Graduate School
Department	Bioethics
Degree	M.A.
Submission	Master's Thesis
Language	English
Research Field	Ethics Health Sciences, Public Health
Keyword	Dissemination and Implementation Science Restorative Justice Public Health Ethics HIV/AIDS Ethical Framework Bioethics Genetic Sequencing Community Engagement
Committee Chair / Thesis Advisor	Dr. Arri Eisen, Emory University
Committee Members	Meg Watson, Centers for Disease Control and Prevention (CDC) Dr. Jessica Sales, Emory University Dr. Gerard Vong, Emory University

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