A Scoping Review of Organ Transplantation in Populations Experiencing Incarceration

Abstract

Despite an aging confined population, the current state of organ transplantation in carceral systems is largely unknown. This scoping review aimed to assess the literature on organ transplantation in populations experiencing incarceration. The review used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for a scoping review. Included references were published between January 2000 and January 2022 in PubMed, Cumulative Index to Nursing and Allied Health Literature via EBSCO, EMBASE.com, PsycInfo via EBSCO, Sociological Abstracts via ProQuest, and Scopus. Two reviewers conducted title and abstract screening, full-text review, and data extraction in order to generate common themes. The initial search yielded 3,225 studies, and 2,129 references underwent screening. Seventy studies underwent full-text review, and 10 met inclusion criteria. These studies revealed heterogeneous perspectives and policies by providers and transplant centers regarding transplant consideration of individuals with incarceration history or current involvement. Two studies on a kidney transplant program for patients experiencing incarceration showed transplant as a sustainable and potentially superior option for people who are incarcerated, as compared with chronic hemodialysis. Literature on transplantation for populations experiencing incarceration is sparse. More research is required to understand the demand for transplants and the ethical implications of the heterogeneous perspectives and policies on practice patterns.

Introduction

Organ transplantation for individuals who are incarcerated is logistically and ethically complex (Ahmad & Eves, 2020; Westall et al., 2008). Although individuals who are incarcerated have a constitutional mandate to receive health care that was established in the Supreme Court’s ruling in Estelle v. Gamble, accessibility to transplantation for individuals with severe and chronic health needs in carceral systems remains underexplored (Ruger et al., 2015; Thurgood & Supreme Court of the United States, 1976).

Policies pertaining to organ transplantation among individuals who are incarcerated vary widely across carceral systems, and, to date, only 40% of states have publicly accessible policies on organ donation (Iwai et al., 2023). Although the Organ Procurement and Transplantation Network (OPTN; 2015) states that “one’s status as a prisoner should not preclude them from consideration for a transplant,” transplant eligibility and transplantation rates among carceral populations have not been clearly established.

The high prevalence of conditions such as hepatitis C virus (HCV) and chronic kidney disease among individuals who are incarcerated suggests a vital role for transplantation in this underserved population (Murphy et al., 2021; Rich et al., 2016; Wang et al., 2022). The OPTN does not routinely collect or report on a patient’s carceral status; thus, population-level data on transplant rates in carceral facilities are not readily available. Without publicly accessible data, the demands, disparities, and outcomes of transplantation cannot be assessed and intervened upon.

The aim of this scoping review was to fill this information gap by assessing the literature on organ transplantation in populations experiencing incarceration. We hypothesized that the literature would be sparse overall. Additionally, we hypothesized that transplant rates would be low due to known challenges associated with providing surgical care to patients who are incarcerated (Bryant et al., 2022; Leech et al., 2021; Mao et al., 2024; Scarlet et al., 2018) despite a potentially high demand for organ transplantation due to the growing number of individuals who are incarcerated and have a chronic medical condition (Bai et al., 2015; Harzke & Pruitt, 2018).

Method

This scoping review was conducted using the guidelines recommended by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for a scoping review (Tricco et al., 2018). A scoping review was selected as the method for this study, given the unknown quantity and quality of the literature. This study was determined as being nonhuman subjects research by the University of North Carolina institutional review board.

A clinical health sciences librarian (S.T.W.) performed a comprehensive electronic search of the literature in the PubMed, Cumulative Index to Nursing and Allied Health Literature via EBSCO, EMBASE.com, PsycInfo via EBSCO, Sociological Abstracts via ProQuest, and Scopus databases. Search terms were used to retrieve articles addressing the two main concepts of the search strategy: organ donation and the incarcerated population. The database search strategies used in this study are outlined in Supplementary Appendix SA1.

The search strategy was conducted in PubMed using keywords and Medical Subject Headings combinations. All other search strategies included keywords and controlled vocabulary, if available. Results were downloaded to EndNote and duplicates were removed. All references were uploaded to Covidence Systematic Review software (https://covidence.org), a web-based tool designed to facilitate and track each step of the abstraction and review process.

The inclusion criteria for the study (1) were articles published between 2000 and 2022, (2) included content pertaining to incarcerated individuals receiving organ and tissue donations, and (3) used quantitative, qualitative, or mixed methods. Exclusion criteria were (1) investigation not fitting with the primary research questions of the scoping review, (2) publications mentioned “incarceration” only when describing participants who were excluded from their studies, and (3) the study was not empirical (e.g., perspectives, commentaries). Due to our interest in literature across carceral settings, the search strategy was developed to broadly capture individuals who had experiences with incarceration, including in jails, state prisons, federal prisons, youth confinement, and other carceral facilities, in addition to individuals who were on parole or probation.

All articles were initially screened by title and abstract by a combination of two independent reviewers (Y.I., J.C.B., and S.R.), with a third reviewer resolving discrepancies between the two coders. Articles that passed the initial review progressed to the full-text review, where each article was assessed by two independent reviewers for content (Y.I., J.C.B., and S.R.). A third reviewer conducted conflict resolution for the full texts, and additional members of the team were consulted for further input (F.M.B. and L.B.-R.). Each reviewer was required to indicate a reason for excluding the article at this stage in the Covidence software. Articles that met the full-text review criteria were then moved into data extraction.

An online data extraction form was developed by the research team (Supplementary Appendix SA2) and formatted on a survey platform (Qualtrics XM, Provo, UT). The extraction form also included a quality assessment instrument using the Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies proposed by the National Institutes of Health (2021). Two independent reviewers (Y.I., J.C.B., and S.R.) completed this phase of data extraction and quality review. The data extraction form was subsequently downloaded and line-by-line analysis was performed. Common themes from the extraction process were generated by the research team, and conflict resolution was achieved through discussion.

Results

Study Characteristics

The PRISMA selection process is summarized in Figure 1. The initial search yielded 3,225 studies, of which 1,096 duplicate references were removed. There were 2,129 references that underwent initial title and abstract screening; of those, 2,059 studies were excluded. The 70 remaining studies underwent full-text review, yielding 10 studies that met all criteria for inclusion and data extraction. All included studies were reviewed for quality by two independent reviewers and determined as having a final quality rating of “good” or “fair.”

Fig. 1.

PRISMA scoping review flow diagram. Source: developed by authors (Page et al., 2021). PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Study characteristics, research design and aims, and primary findings are summarized in Table 1. All studies were conducted between 2005 and 2021. Most studies were conducted in the United States, with one conducted in Canada and one in Iran. Research designs included three retrospective studies, three cross-sectional survey studies, one qualitative study, one literature review, one case study, and one ethical analysis.

Table 1.

Main Study Findings of References Included in Scoping Review

Article title, publication, and study location	Research design	Aim	Primary findings
Organ Allocation for Liver Transplantation According to the Public Opinion (Danesh et al., 2012), Hepatitis Monthly, Iran	Qualitative study through individual interviews and focus groups	To identify decision criteria about allocation of donated liver to potential recipients from public points of view.	Most study participants believe that in equal medical conditions, some individual and societal criteria could be used to prioritize patients for receiving donated livers. The criteria include psychological acceptance, ability to pay postoperative care costs, being breadwinner of the family, family support, being socially valued, ability to be instructed, lack of mental disorders, young age, being on waiting list for a long time, lack of patient’s role in causing the illness, first-time transplant recipient, critical medical condition, high success rate of transplantation, lack of concurrent medical illnesses, not being an inmate at the time of receiving transplant, and bearing Iranian nationality.
National Survey of Provider Opinions on Controversial Characteristics of Liver Transplant Candidates (Secunda et al., 2013), Liver Transplantation, USA	Cross-sectional survey study of liver transplant providers	To assess the opinions of U.S. transplant providers regarding the ways in which controversial medical and psychosocial characteristics influence patient eligibility for liver transplantation.	Most providers identified a patient age ≥80 years (62.7%), a body mass index ≥45 kg/m2 (56.6%), and current incarceration with a lifetime sentence (54.7%) as absolute contraindications to liver transplantation. In a multivariate analysis, the identification of absolute contraindications varied significantly with the provider type, the center volume, and the geographical region. Less than half of the providers reported that their centers had written policies regarding most of the characteristics examined.
Kidney Transplant Program for Prisoners: Rewards, Challenges, and Perspectives (Gowda et al., 2020), Transplantation, USA	Retrospective descriptive study of a kidney transplant program	Perform a descriptive analysis of demographics and clinical outcomes of all referred or transplanted prisoners between March 2003 and July 2018.	Despite the challenges, a renal transplant program for prisoners can be successfully sustained, resulting in better clinical outcomes and cost benefit when compared with hemodialysis.
Evaluation of a Renal Transplant Program for Incarcerated ESRD Patients (Panesar et al., 2014), Journal of Correctional Health Care, USA	Retrospective study of electronic medical records	To assess graft and patient survival rates, wait list times, donor sources, and projected cost differences between the patients remaining on dialysis and those who were transplanted at a maximum-security state correctional facility for males.	Twelve of the 104 patients with ESRD at a prison dialysis unit were activated: nine transplanted, two released active on the United Network for Organ Sharing list, and one died after listing. Kidneys from antibody-positive HCV donors were given to consenting HCV antibody-positive recipients. The average waiting period was 6.6 months for HCV-positive kidney recipients and 49.6 months for others. Compared with costs of continuing dialysis, treatment resulted in substantial savings. Patients with HCV experienced good graft and survival rates when given grafts from HCV donors, suggesting that transplantation is a viable, cost-effective option for the incarcerated patient with ESRD, including those who have chronic HCV infection.
End-Stage Liver Disease in a State Prison Population (Baillargeon et al., 2007), Annals of Epidemiology, USA	Retrospective study of the Texas Department of Criminal Justice prison-wide medical information system	Examine the prevalence, mortality, and clinical characteristics of ESLD in the nation’s second largest state prison system.	ESLD was diagnosed in 484 inmates (131/100,000); 213 (57/100,000) died of ESLD. Those who were Hispanic, 30–49 years of age, >50 years of age, HIV monoinfected, HCV monoinfected, or HIV/HCV coinfected had elevated ESLD prevalence and mortality rates. ESLD mortality in Texas’s prison population is approximately 3 times higher than that of the general population, reflecting elevated rates of HCV and HIV/HCV coinfection among prisoners. The only viable treatment option for many prisoners with ESLD will be liver transplantation.
Disparities in Access to Kidney Transplantation: Are American Transplant Centers Willing to Transplant Inmates? (Faber et al., 2021), Journal of Urology, USA	Cross-sectional survey study of adult kidney transplant centers listed on the UNOS website	Discover how many American transplant centers are willing to evaluate, list, and transplant incarcerated individuals.	Of 122 centers responding, 49 were willing to evaluate incarcerated individuals, 43 willing to list, and 42 willing to transplant. Reported considerations were type of crime, length of sentence, and likelihood of release. Frequently cited reasons for not treating inmates were inadequate follow-up, insurance/funding, transportation, medication compliance, security, patient safety, and lack of social support. Twenty-four centers refused to disclose their policy or did not have one. Two centers claimed incarceration was a contraindication to kidney transplantation.
Constitutional Challenges to Liver Transplant Policy (Tapper et al., 2019), Transplantation, USA	Literature review of two legal databases	Understand potential constitutional challenges to transplant policy to allow for preparedness to promote justice in transplantation and avoid legal pitfalls.	The search returned 1,562 cases: 290 involved the denial of insurance coverage for a transplant due to a patient’s failure to abstain from drinking, 273 cases involved inmates who were denied a liver transplant, 2 involved a constitutional claim for patient requesting a bloodless transplant for religious reasons, and 2 cases arose from age discrimination in transplant criteria. These cases highlight legal pitfalls related to the First Amendment (religious freedom), Eighth Amendment (cruel and unusual punishment), and 14th Amendment (equal protection and due process).
Adult Liver Transplant Survey: Policies Towards Eligibility Criteria in Canada and the United States (Kroeker et al., 2008), Liver International Canada, USA	Cross-sectional survey study of liver transplant program directors in Canada and the United States	To assess the current practice patterns of liver transplant centers in Canada and the United States regarding transplant eligibility.	There is a lack of consensus regarding marijuana use, HIV status, ability to accept blood transfusions, and prisoner status.
Pedophiles and Stalkers as Transplant Candidates: One Program’s Experience (Paris et al., 2005), Progress in Transplantation, USA	Case study of six patients at a single center	To raise awareness of the issues associated with pedophiles and stalkers and to provide the basis for better-informed discussions based on one program’s struggles with its candidate selection and follow-up.	Six patients (five pedophiles and one stalker) were assessed at a major regional multiorgan transplant program; each patient presented with unique and challenging assessment, treatment, and selection issues for the transplant team.
The Structural Conundrum of Parolees and Kidney Transplantation (Ahmad & Eves, 2020), Clinical Transplantation, USA	Ethical analysis of the regulatory and social context of kidney transplantation for parolees	Discuss the access needs of the parolee (previously incarcerated) population specifically.	This ethical analysis examines the complexity of these issues and deliberates on ways to balance the competing priorities of justice, respect for this patient population as individuals and as a disadvantaged class, and the societal interests regarding organ allocation and considerable economic burdens of ESRD on parolees, the justice system, and the public.

ESLD, end-stage liver disease; ESRD, end-stage renal disease; HCV, hepatitis C virus.

Half of the studies explicitly stated that they underwent review by an institutional review board. Such a review was deemed not applicable in two studies, and the review status was unclear in three studies. Informed consent was obtained in two studies, deemed not applicable in three studies, and unclear or not explicitly mentioned in five studies.

Organ Transplantation in Populations Experiencing Incarceration

Half of the studies focused on liver transplantation (n = 5), and 40% focused on kidney transplantation (n = 4). One investigation used case studies that involved both heart and liver transplantation scenarios. The indications for transplantation were most commonly due to chronic conditions (e.g., end-stage renal disease and end-stage liver disease [ESLD]) and infectious etiologies (e.g., HCV and HIV).

Five (50%) studies included patients who were incarcerated in their study population (Baillargeon et al., 2007; Gowda et al., 2020; Panesar et al., 2014; Paris et al., 2005; Tapper et al., 2019). Two of these studies used large-scale databases (i.e., litigation database and state prison system database), yielding over 1,500 individuals in their study population: One reported on situations involving liver transplantation that were most likely to lead to constitutional violations against transplant recipient and the other reported on the disproportionately high rates of ESLD in a Texas prison and the anticipated high demand for liver transplantation (Baillargeon et al., 2007; Tapper et al., 2019).

Seven studies explicitly focused on individuals who are incarcerated in prisons, one study focused on individuals on parole (Ahmad & Eves, 2020), one study included an individual who was previously incarcerated in a jail (Paris et al., 2005), and another study did not specify the type of carceral facility (Secunda et al., 2013).

Three studies were conducted at single sites and had anywhere from 6 to 104 individuals in their total study population (Gowda et al., 2020; Panesar et al., 2014; Paris et al., 2005). Two of these studies were conducted at the same institution in New York State and reported on a kidney transplant program that resulted in better clinical outcomes and cost benefits compared with hemodialysis (Gowda et al., 2020; Panesar et al., 2014). Another study used six case studies from a single center to discuss ethical issues associated with transplant-related decision making regarding individuals charged with pedophilia and stalking offenses (Paris et al., 2005).

Perspectives on Transplantation in Populations Who Have Experienced Incarceration

Five (50%) studies assessed diverse perspectives on transplantation for individuals who were incarcerated. Of these five studies, two surveyed transplant centers (Faber et al., 2021; Kroeker et al., 2008), one assessed provider opinions (Secunda et al., 2013), and one assessed “public opinion of transplantation among people who are incarcerated,” with the public including recipients of transplant services, service-providing individuals, and laypeople with no prior involvement with transplantation (Danesh et al., 2012).

These studies varied in their findings, with up to 55% of providers indicating incarceration as a contraindication to transplant assessment or receipt (Secunda et al., 2013). Approximately one third (42/122) of surveyed transplant centers reported willingness to transplant with incarcerated people and nearly 20% of studies refused to disclose or did not have a policy pertaining to incarceration status and transplantation (Faber et al., 2021).

Exclusions for Organ Transplantation

Exclusion for organ transplantation due to carceral status was discussed in most (90%) studies. One study identified incarceration status as one of the most common controversial characteristics for determining transplant candidates, followed by psychiatric diagnoses and marijuana use (Secunda et al., 2013). The most common reasons for transplant exclusion among incarcerated people were being medically unsuitable for transplant, issues with adherence, requirements for release in the near future, and other anticipated social barriers (e.g., insurance, transportation, lack of social support).

Discussion

This scoping review examined the literature relevant to organ transplantation for individuals experiencing incarceration. As hypothesized, we found that knowledge on this topic is generally sparse, despite a growing body of evidence supporting a disproportionately high prevalence of chronic disease that may potentially benefit from transplantation (Binswanger et al., 2009; Garcia-Grossman et al., 2023; Harzke, Baillargeon, Kelley, et al., 2009; Harzke, Baillargeon, Paar, et al., 2009; Murphy et al., 2021). To our knowledge, this is the first scoping review to assess organ transplantation for populations who have experienced incarceration.

An important finding of this scoping review is the identification of studies that have reported successful transplant programs for patients who are incarcerated (Gowda et al., 2020; Panesar et al., 2014). These studies pointed to transplantation as a viable and potentially superior treatment option for people who are incarcerated, a group that historically has been treated with chronic hemodialysis as opposed to kidney transplantation. Panesar et al. (2014) reported a 100% one-year posttransplant patient and organ survival rate, with three allografts failing at or before the fifth posttransplant year; however, none of these allographic failures were due to noncompliance.

These findings were consistent with those reported by Gowda et al. in 2020. These two studies were reported from the same carceral institution and are promising not only for patient outcomes but also for their financial benefits to both the patient and carceral system (Gowda et al., 2020; Panesar et al., 2014). Our literature search identified no other studies that conducted tailored transplant programs for patients who are incarcerated. Future studies may benefit from developing similar programs for kidney transplants at other carceral institutions, increasing study population size, and expanding to other organ types (e.g., liver, heart, lung).

Another key finding of this study is the broad heterogeneity among transplant centers and providers in their criteria for transplant assessment and consideration (Kroeker et al., 2008). As discussed by Secunda et al. (2013), incarceration was one of the top three most controversial topics raised by over half of the providers who completed their survey. Consistent with these findings, Faber et al. (2021) reported that only 42 out of 122 surveyed transplant centers in the United States were open to transplantation for patients who were incarcerated. Literature on true transplantation rates was not captured in this review and rates are not regularly collected or reported by organ donation networks (e.g., United Network for Organ Sharing); thus, the impact of these findings on practice patterns and clinical outcomes remains unknown.

Additionally, organ donation by people who are incarcerated was beyond the scope of this study; however, the heterogeneity observed in transplantation guidelines raises concern over the decisions surrounding the donation of organs in this population, as well. One future direction of this work includes evaluating the literature on organ donation in populations experiencing incarceration to assess whether heterogeneity in organ donation rates and outcomes is similarly appreciable.

This review also leads us to suspect a lack of direct patient involvement in decision-making and policies pertaining to individuals who are incarcerated. Many studies included thoughtful discussions around the ethical principles that guided transplant eligibility and surgery, but no studies explored community input from patients who were affected by incarceration or had prior experience with the criminal-legal system. Although it is possible that our literature review did not capture publication outlets that focused on these patient factors, increasing community input may aid in the development of ethical, inclusive transplant guidelines (Gordon et al., 2013; James et al., 2021; Patzer et al., 2014, 2017, 2021).

Finally, our scoping review highlights the need for more robust research on transplantation for this aging population that has an expanding number of people who are affected by noninfectious chronic medical conditions (Bai et al., 2015; Harzke & Pruitt, 2018). We suspect the general paucity of literature is due, in part, to limited data pertaining to organ transplantation in individuals who are incarcerated or have recently interfaced with the criminal-legal system. The OPTN does not currently mandate the reporting of carceral status, need for transplantation, eligibility and assessment for transplantation, receipt of an organ transplant, or clinical outcomes following transplantation.

Without clear reporting and transparency of these data, the true demand for transplantation will remain unknown and interventions that aim to address potential disparities will be challenging. Advocacy for the development of policies and the institution of laws that mandate data reporting and transparency are critical for ensuring equitable clinical care. Although these data are not accessible, researchers and clinicians should look to alternative sources (e.g., hospital-level data) to obtain information about incarcerated patients who require transplantation and work to identify potential gaps in care.

Limitations

This study has some limitations. A scoping review was selected as the review methodology to accommodate a broader inclusion of literature; however, we were unable to make statistical inferences or perform standardized comparisons due to this choice. Our search strategy used several databases, but it is possible that smaller-scale and international studies may not have been captured. To expand the number of studies for potential inclusion, all languages were included, and several non-English texts were reviewed in the title and abstract screening phases. However, only studies written in English were ultimately included in the final phase of the review. Finally, this review is subject to human error and bias. To mitigate this risk, each phase of the review was completed with two independent reviewers.

Conclusion

In this scoping review of organ transplantation for carceral populations, we identified heterogeneous perspectives and policies by providers and centers pertaining to transplant consideration. Two studies on a kidney transplant program for patients experiencing incarceration showed transplant as a sustainable and potentially superior treatment option for people who are incarcerated, as compared with chronic hemodialysis; however, literature on this specific population remains sparse. More robust research on transplantation is required to understand the demand for transplants, gaps in care, and ethical implications of the heterogeneous perspectives and policies on practice patterns.

Authors’ Contributions

Concept and design: Y.I., J.M.L., and L.B.-R.; acquisition, analysis, or interpretation of data: Y.I., J.C.B., S.R., S.T.W., and L.B.-R.; drafting of the article: Y.I.; critical revision of the article for important intellectual content: all authors; obtained funding: F.M.B. and L.B.-R.; administrative, technical, or material support: S.T.W. and L.B.-R.; supervision: L.B.-R.

Disclaimer

The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the Robert Wood Johnson Foundation.

Author Disclosure Statement

L.B.-R. and F.M.B. were supported by the Robert Wood Johnson Foundation. The other authors disclosed no potential conflicts of interest with respect to the research, authorship, or publication of this article.

Funding Information

The authors received no financial support for the research, authorship, or publication of this article.

Supplementary Material

Supplementary Appendix SA1

Supplementary Appendix SA2