Legal and Ethical Issues to Modernizing Public Health Surveillance Supported by a Private Entity Öffentlichkeit

Abstract

In the United States, public health surveillance (PHS) data are collected through thousands of reporting units at the local, state, territorial, tribal, and federal levels. Governance, collaboration, informatics, and analytics all face difficulties. As evidenced by PHS shortcomings during the COVID-19 pandemic, these problems are ongoing and extremely concerning. Therefore, a group of public health professionals proposes to pilot a new, Data-entry Once, One Health, Integrated Disease Surveillance and Response (IDSR) Health Information System (HIS) to modernize US PHS supported by a private entity contracting with the Centers for Disease Control and Prevention (CDC). Working together to establish this public-private partnerships (PPP) has potential value, but legal and ethical issues must be addressed first. Legal and regulatory frameworks (such as HIPAA and HITECH), consent, data ownership, conflicts of interest, discrimination, and public trust are among the concerns addressed. We seek to investigate the legal and ethical issues to modernizing PHS supported by a private entity in the United States. Qualitative research was conducted in PubMed™ and Google Scholar™, and thirty-seven resources were reviewed. We must carefully evaluate and handle the legal and ethical issues to guarantee that this new data endeavor benefits public health while protecting individuals' rights and wellbeing.

Table of Contents

Chapter 1: Introduction 1

Background and Significance 1

Purpose Statement 3

Research Questions 3

Chapter 2: Methods 4

Chapter 3: Literature Review 5

1. Modernizing Public Health Surveillance (PHS) 6        

2. Legal Issues 8

2A. Legal and Regulatory Frameworks 8

2AI. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) 8

2AII. The Health Information Technology for Economic and Clinical Health (HITECH) 9

2B. Date Ownership 13

2C. Consent 13

3. Ethical Issues 15

3A. Conflict of Interest 15

3B. Discrimination 15

3C. Public Trust 18

4. Amazon and AWS 20

5. Public-Private Partnerships in Public Health 21

Chapter 4: Discussion 24

Limitations of Literature Review 24

Gap Analysis 24

Chapter 5: Conclusion 25

Chapter 6: Recommendations 26

References 27

Tables and Figures

Figure 1. Sample Flow of Public Health Data 6

Figure 2- Framework for Global Assessment of HITECH 12

About this Master's Thesis

Rights statement

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School	Rollins School of Public Health
Department	Hubert Department of Global Health
Degree	M.P.H.
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health
Stichwort	Discrimination Public-Private Partnerships in Public Health Amazon and AWS Consent Public Trust Conflict of Interest Date Ownership Modernizing Public Health Surveillance HITECH HIPAA
Committee Chair / Thesis Advisor	Scott McNabb, Emory University

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