Improving the Interpretation of Vulnerability in IRB Review of Research Involving Asylum Seekers Open Access

Abstract

Vulnerability is a complex term that is commonly used but rarely defined. Research institutions including but not limited to the Office for Human Research Protection (OHRP) and Institutional Review Boards (IRBs) have exclusive lists of populations that are considered vulnerable. This is problematic for populations that may experience vulnerabilities but are not included in the list, such as asylum seekers. This paper aims to demonstrate how a novel approach to conceptualizing vulnerability—Luna’s “layered approach”—can improve the interpretation of the U.S. regulations governing research with human subjects (i.e., the “Common Rule” regulations) for research involving asylum seekers in the United States. It will then critique existing various conceptions of vulnerability and ultimately argue that the layered approach can best aid researcher’s attempts to interpret the Common Rule in research involving asylum seekers. 

Table of Contents

PURPOSE............................................................................................... 1

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

Who Is an Asylum Seeker?.................................................................. 1

The Asylum Process............................................................................ 2

The Benefits of Asylum....................................................................... 4

Asylum Seekers in Research................................................................ 4

Goals of Research Involving Asylum Seekers..................................... 5

BACKGROUND...................................................................................... 7

Research Protections: The Common Rule........................................... 7

Research Protections for Asylum Seekers: Limitations...................... 8

Vulnerabilities experienced by Asylum Seekers.................................. 11

SIGNIFICANCE..................................................................................... 14

METHODS........................................................................................... 15

FINDINGS............................................................................................ 17

Special Scrutiny............................................................................... 18

Susceptibility.................................................................................... 22

The Vulnerability Taxonomy............................................................ 25

The Layered Approach to Vulnerability............................................ 29

DISCUSSION........................................................................................ 33

Replacing Vulnerability is Counterproductive................................. 33

Interpreting and Implementing the Common Rule............................ 34

Implications for IRBs....................................................................... 36

Personal Reflections....................................................................... 38

LIMITATIONS...................................................................................... 40

CONCLUSION...................................................................................... 42

Bibliography: Printed Sources.................................................. 43

Bibliography: Non-Printed Sources......................................... 45

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
Keyword	Research Ethics Asylum Common Rule Asylum-Seekers Vulnerability
Committee Chair / Thesis Advisor	Lavery, James, Emory University
Committee Members	Zeidan, Amy, Emory University Bagley, Margo, Emory University

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