Ethically Including Individuals Who Are Incarcerated in Clinical Research: A Cross-Sectional Survey Exploring the Perspectives of Cardiovascular Researchers Open Access
Urban, Dana (Fall 2019)
Abstract
Background: Cardiovascular disease, the leading cause of morbidity and mortality in the United States, disproportionately affects individuals in jails and prisons. Incarceration and cardiovascular disease share many of the same risk factors, and both affect minority groups at higher rates than the general population. Federal and ethical guidelines designed to protect vulnerable populations often inadvertently exclude individuals who are incarcerated in clinical research. This leads to underrepresentation of key subsets of the population in study results, including individuals who are incarcerated. Clinical research is important to accurately identify and find solutions to reduce health disparities.
Objective: To explore the barriers to including incarcerated individuals in clinical research studies by investigating cardiovascular researchers’ attitudes and experiences, and to determine whether additional resources targeting researchers could assist in overcoming these barriers.
Methods: A web-based cross-sectional survey was conducted to look at the current practices and attitudes on this topic among cardiovascular researchers. Cardiovascular researchers from the Heart Failure Clinical Research Network were recruited via email to participate in the study. Data were analyzed using SAS.
Results: Fifty-six cardiovascular researchers completed the survey, for a response rate of 34.4%. Most researchers (89.3%) were unfamiliar with protocols to retain subjects who become incarcerated while enrolled in their research studies. While 17.9% of respondents were aware of a subject’s incarceration during a study, only two (3.6%) had worked on a study that discussed subsequent incarceration in the protocol or consent. The majority (55.4%) felt it would be valuable to be more familiar with this process, and most (71.4%) were willing to use resources to facilitate this in future studies.
Conclusion: There is demonstrated interest and perceived value among cardiovascular researchers in the development of resources to assist in ethically including individuals who are incarcerated in studies. By increasing representation of underserved groups in research, we can gain a greater understanding of health disparities, and ultimately find ways to improve overall health outcomes.
Table of Contents
I. CHAPTER 1: INTRODUCTION 1
A. CONTEXT, PROBLEM, AND PURPOSE 1
B. RESEARCH QUESTIONS 3
C. DEFINITIONS OF TERMS 6
II. CHAPTER 2: BACKGROUND AND LITERATURE REVIEW 9
A. CARDIOVASCULAR DISEASE IN THE UNITED STATES 9
B. INCARCERATION IN THE UNITED STATES 11
C. HEALTH OF CORRECTIONAL POPULATIONS 19
D. CVD BURDEN IN CORRECTIONAL POPULATIONS 21
E. DATA ON THE HEALTH OF INCARCERATED PERSONS 23
F. FEDERAL AND ETHICAL GUIDELINES 25
G. IDENTIFYING HEALTH DISPARITIES 26
III. CHAPTER 3: MANUSCRIPT 28
A. ABSTRACT 30
B. INTRODUCTION 31
C. METHODS 33
D. RESULTS 37
E. DISCUSSION 39
F. CONCLUSION 42
G. TABLES 43
IV. CHAPTER 4: CONCLUSION 48
A. RECOMMENDATIONS AND NEXT STEPS 48
B. CONCLUSION 49
V. APPENDICES 50
A. CONSENT FORM 50
B. SURVEY INSTRUMENT 52
C. RECRUITMENT EMAIL 55
VI. REFERENCES 56
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