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Coercion and Informed Consent in Research Involving Prisoners
Abstract
Prison-based research has been limited due to concern that prisoners may represent a vulnerable population secondary to possible coercion and limited capacity for voluntary informed consent. This study was designed to assess decisional capacity and susceptibility to coercion in prison research subjects. Subjects were 30 mentally ill prisoners and 30 healthy controls. The groups were compared on ability to provide informed consent to a hypothetical drug trial, susceptibility to possible coercion, neuropsychological functioning, and psychiatric symptoms. Results indicated that all controls and all but one of the prisoners demonstrated adequate capacity to consent to the hypothetical drug trial. However, when decisional capacity was measured quantitatively, prisoners performed significantly worse regarding two aspects of this ability. Regarding possible coercion, prisoners' main reasons for participating in research included avoiding boredom, meeting someone new, appearing cooperative in hopes of being treated better, and helping society. Neuropsychological functioning was strongly positively correlated with decisional capacity and negatively correlated with susceptibility to possible coercion, whereas psychiatric symptoms were only weakly correlated with these variables. In conclusion, a very high percentage of particularly vulnerable, mentally ill prisoners demonstrated adequate capacity to consent to research. Lower scores on a quantitative measure of decisional capacity suggest that extra care should be taken during the consent process when working with these subjects. The reasons prisoners gave for participating in our research indicated that the prison setting may have influenced their decision to participate, but that they were not actually coerced into doing so. Despite serious past incidents, ethicists will need to consider the possibility that prisoners have become an overprotected population.
... Prisoners may be considered vulnerable due to the higher prevalence of physical and mental health problems than that of the general population [9][10][11], impacts of the prison environment such as social exclusion [10] and higher morbidity rates [12]. Others have raised concerns that prisoners may be more vulnerable to coercion or may lack the ability to give informed consent to participate in research [13]. Such concerns have led to a paucity of research being conducted with prisoners, due to fears about the vulnerability of this group [8,13,14]. ...
... Others have raised concerns that prisoners may be more vulnerable to coercion or may lack the ability to give informed consent to participate in research [13]. Such concerns have led to a paucity of research being conducted with prisoners, due to fears about the vulnerability of this group [8,13,14]. Despite this, there is a small amount of evidence to suggest that conducting research with prisoners does not cause undue harm, and may even benefit participants [15]. ...
... Others have noted the difficulties that researching in prisons can bring [33][34][35], and this, combined with a perception of prisoners as a 'vulnerable' population, has led to a paucity of research with this population [8,13,14]. However, this study has found that not only does research with such a population contribute to both clinical and scientific improvements, but it may also provide benefits to the participants themselves. ...
Background
There is an apparent reluctance to engage ‘vulnerable’ participants in conversation about sensitive topics such as suicide and violence and this can often lead to a paucity of research in these areas. This study aimed to explore the experiences of male prisoners taking part in quantitative and qualitative research on suicide and violence.
Methods
Participants at four male prisons completed a visual analogue scale of mood before and after data collection for both a cross-sectional study and also a qualitative interview. Participants were also asked to give three words to describe their experience of participation. A paired samples T-test was conducted to explore the difference in pre- and post-mood ratings, and content analysis was conducted to explore the positive and negative comments on participants’ experiences.
Results
Overall, participants’ mood significantly improved after participating in a cross-sectional study about suicide and violence (from 4.8 out of 10 to 5.3, p = 0.016), and there was no significant change in mood following participation in a related qualitative study (5.1 to 5.0, p = 0.793). Participants primarily described their experiences as positive, stating that the process had been satisfying, calming, interesting, enlightening and beneficial. A smaller number of participants described their experiences as stressful, challenging, saddening, uncomfortable and bizarre.
Conclusions
This study has found that researching sensitive topics such as suicide and violence with male prisoners did not have a negative impact on mood, rather that participants largely enjoyed the experience. These findings dispel the myth that research about sensitive topics with prisoners is too risky and could inform how future researchers assess levels of risk to participants.
... Ultimately, we suggest that our text is more process and less policy focused and therefore ultimately contributes to quite a different and distinct perspective on prison health research. We hope that this first book to explicitly focus on issues and innovations associated with prison health research also contributes to a small but important literature on ethics in prison research (Arboleda-Flórez 2005;Brewer-Smyth 2008;Crighton 2006;Fine and Torre 2006;Freudenberg 2007;Gostin 2007;Hornblum 1997;Moser et al. 2004;Overholser 1987;Pope et al. 2007;Shaw et al. 2014;Ward and Bailey 2012). Ethical issues are at the forefront of any research study, but arguably require more careful consideration in a prison context where notions of informed consent, for example, are more complicated. ...
... For example, the literature relating to consent specifically in relation to prison health research is relatively thin with the following study aside (Waldram 1998). This is, however, a wider issue as there has been a longstanding debate about the extent to which people in custody can give informed consent in the same ways that people in community settings are able to (Roberts and Indermaur 2003; Moser et al. 2004;Ward and Bailey 2012). ...
... Prisoners are, in general, a powerless group where often decisions about their institutional routine are made on their behalf (Martin 2000). This can leave prisoners feeling unable to refuse participation or 'walk away' from research activities due to the fear that there will be possible reprisals (Wincup 1999;Buckland and Wincup 2004;Moser et al. 2004;Waldram 2007). On the other hand, prisoners may perceive that the research is of direct benefit to themselves, perhaps understanding that their participation will result in gaining early release or impact favourably on decisions for parole (Buckland and Wincup 2004). ...
This book constitutes the first publication to utilise a range of social science methodologies to illuminate diverse and new aspects of health research in prison settings. Prison contexts often have profound implications for the health of the people who live and work within them. Despite these settings often housing people from extremely disadvantaged and deprived communities, many with multiple and complex health needs, health research is generally neglected within both criminology and medical sociology. Through the fourteen chapters of this book, a range of issues emerge that the authors of each contribution reflect upon. The ethical concerns that emerge as a consequence of undertaking prison health research are not ignored, indeed these lie at the heart of this book and resonate across all the chapters. Foregrounding these issues necessarily forms a significant focus of this introductory chapter.
Alongside explicitly considering emerging ethical issues, our contributing authors also have considered diverse aspects of innovation in research methodologies within the context of prison health research. Many of the chapters are innovative through the methodologies that were used, often adapting and utilising research methods rarely used within prison settings. The book brings together chapters from students, scholars, practitioners and service users from a range of disciplines (including medical sociology, medical anthropology, criminology, psychology and public health).
... Obviamente, la obligatoriedad de la firma del TA por parte de los individuos privados de libertad tiene por objetivo el de proteger a los presos de cualquier coacción para participar en la investigación, asegurando sus derechos de consentir o no su participación (Byrne, 2005). Los ejemplos más comunes de esta coacción incluyen la presión directa hecha por los profesionales de la prisión y/o su participación será motivo de castigo (Moser et al., 2004). Aún, es preciso considerar que la firma de un documento en el contexto presidiario -sea este de cualquier tipo-puede levantar y reforzar barreras que son inherentes al estudio con poblaciones institucionalizadas, perpetuando su silencio. ...
... Además, es posible cuestionar cuánto de efectiva y garante es la firma del TA y si refleja la voluntad real del propio sujeto en la participación de la investigación. Una vez que, de acuerdo con Moser et al. (2004) las principales razones de los presos para participar en los estudios externos incluían evitar el tedio, encontrar personas diferentes y mostrarse cooperativos, con la esperanza de que serán tratados mejor dentro del presidio. En este panorama, cuestionamos cuánto hay de cierto en la libertad de actuación de los presos a la hora de consentir su participación en las investigaciones en el contexto del presidio. ...
... Ya que se puede esperar que los presos considerados "recuperables" se muestren más solícitos y quieran ayudar a la Psicología, Conocimiento y Sociedad 8(1), 194-217 (mayo 2018-octubre 2018 sociedad. Es por esta razón que algunos autores (Moser, et al., 2004) entienden que el ambiente del presidio es inherentemente coercitivo. ...
Reporting the procedures and challenges of a study, rather than a simple formality, is an important way to contribute to the improvement and strengthening of different manners of doing research. Thus, this article sought to describe the method used in a research which aimed to understand the meanings attributed to paternity by men who are deprived of freedom, as well as discuss the challenges and possibilities of fieldwork conducted in a male-only prison institution. Among the many possibilities of choice, the qualitative methodology of ethnographic orientation supported the research described here, since it was considered an important tool for us to deconstruct potential social patterns, conceptions and ideas about how people lead and live their lives.
... Obviamente, la obligatoriedad de la firma del TA por parte de los individuos privados de libertad tiene por objetivo el de proteger a los presos de cualquier coacción para participar en la investigación, asegurando sus derechos de consentir o no su participación (Byrne, 2005). Los ejemplos más comunes de esta coacción incluyen la presión directa hecha por los profesionales de la prisión y/o su participación será motivo de castigo (Moser et al., 2004). Aún, es preciso considerar que la firma de un documento en el contexto presidiario -sea este de cualquier tipo-puede levantar y reforzar barreras que son inherentes al estudio con poblaciones institucionalizadas, perpetuando su silencio. ...
... Además, es posible cuestionar cuánto de efectiva y garante es la firma del TA y si refleja la voluntad real del propio sujeto en la participación de la investigación. Una vez que, de acuerdo con Moser et al. (2004) las principales razones de los presos para participar en los estudios externos incluían evitar el tedio, encontrar personas diferentes y mostrarse cooperativos, con la esperanza de que serán tratados mejor dentro del presidio. En este panorama, cuestionamos cuánto hay de cierto en la libertad de actuación de los presos a la hora de consentir su participación en las investigaciones en el contexto del presidio. ...
... Ya que se puede esperar que los presos considerados "recuperables" se muestren más solícitos y quieran ayudar a la Psicología, Conocimiento y Sociedad 8(1), 194-217 (mayo 2018-octubre 2018 sociedad. Es por esta razón que algunos autores (Moser, et al., 2004) entienden que el ambiente del presidio es inherentemente coercitivo. ...
Relatar los procedimientos y desafíos de un estudio, más que una simple formalidad, se configura como una importante forma de contribuir para el perfeccionamiento y fortalecimiento de diferentes modos de hacer investigación. De esta forma, este artículo buscó describir el método utilizado en una investigación cuyo objetivo fue comprender los significados dados a la paternidad de los hombres que están privados de libertad, además de discutir los desafíos y posibilidades de un trabajo de campo realizado en una institución penitenciaria masculina. Entre las innumerables posibilidades de elección, la metodología cualitativa de orientación etnográfica sostuvo la investigación aquí descripta, una vez que fue considerada una herramienta importante para deshacer padrones, conceptos e ideas que podamos llegar a tener sobre como las personas conducen y viven sus propias vidas.
... The studies described in Chapter Three, Four, and Five involved individuals currently incarcerated. Prison-based research has been criticized on grounds that prisoners may represent a population vulnerable to coercion and with a limited capacity for voluntary informed consent (Veneziano 1986); although see Moser 2004(Moser, Arndt et al. 2004. I was very aware of this issue throughout my dealings with this population. ...
... The studies described in Chapter Three, Four, and Five involved individuals currently incarcerated. Prison-based research has been criticized on grounds that prisoners may represent a population vulnerable to coercion and with a limited capacity for voluntary informed consent (Veneziano 1986); although see Moser 2004(Moser, Arndt et al. 2004. I was very aware of this issue throughout my dealings with this population. ...
Two broad classes of system regulate behavior: those that regulate behaivour in response to affect-neutral task demands (classic executive functions) and those that regulate behaviour according to reinforcement history. As discussed in Chapter One, psychopathy has been suggested to be the developmental consequence of both. In Chapter Two, I explore several manipulations of an executive measure: the parametric Number Stroop paradigm. In Chapter Three, I apply this measure, together with the Object Alternation (OA) and Spatial Alternation (SA) tasks to individuals with psychopathy. Individuals with psychopathy presented with difficulty only on the OA task adding to suggestions that the disorder is associated with difficulties choosing between objects associated with different levels of reward/punishment. This hypothesis is explored further through the use of a novel paradigm, the Differential Reward/ Punishment Learning Task in Chapter Four. Data from this task suggested that individuals with psychopathy face particular difficulty with objects associated with punishment. In Chapter Five, I further explored the processing of stimuli associated with reward/ punishment in individuals with psychopathy through the use of an affective priming paradigm. In Chapter Six, I explore the interaction of systems regulating behavior in response to affect-neutral task demands and those involved in processing emotional stimuli through the use of the Affective Number Stroop paradigm. I demonstrate the effects of emotional stimuli on executive processing as well as the effects of executive processing on emotional processing. In Chapter Seven, I describe potential future directions for this work.
... Past incidences of the exploitation of prisoners for unethical research have prompted understandable caution; yet, it has also been convincingly argued that denying prisoners the opportunity to participate in research that could benefit them is also unjust (Moser et al., 2004;Chwang, 2010). In this case, participants have the capacity to participate in higher education and are thus assumed to be in a position to be able to give informed consent, to be obtained in writing before data collection commences. ...
Introduction. This short paper introduces 'progress logs', an adaptation of the solicited diary method, and details their planned use in a forthcoming study on the information behaviour of students in transition from prison to higher education. Development of the method. Progress logs are designed to capture individual-level qualitative data over a period of time, using prompts which build on previous prompts to generate rich data, allow opportunities for participant reflection and provide a narrative of progress. The study context. The suitability of this method for studying the behaviour of individuals in transition is evaluated. Details of the proposed study are provided, including consideration of sampling, recruitment and ethics. Application of the method. The application of the progress logs method to the study context is described, covering the duration, frequency of prompts and choice of topics. Strengths and limitations. The strengths and weaknesses of this method are evaluated. Despite sharing some of the drawbacks of the solicited diary method, progress logs also build on their advantages to build a narrative of change over time. Conclusions. It is concluded that progress logs offer a suitable means to gather in-depth data about individuals’ information behaviour, especially during transitions.
... We then expanded our search to the broader health literature. While the number of preexisting survey items on this topic we found even outside of reproductive health was small, we were able to find relevant research in two domains of health: inpatient mental health treatment (the MacArthur Admissions Experience Survey in particular), and research on research participation itself (including the Iowa Coercion Questionnaire) (Moser et al. 2004;Lidz 1998;Dugosh et al. 2010;Golay et al. 2017;Gardner et al. 1993). From these two subfields, we drew from psychometrically validated questions and scales, as well as benefited from the theoretical debates that went into their construction. ...
There is growing consensus in the family planning community around the need for novel measures of autonomy. Existing literature highlights the tension between efforts to pursue contraceptive targets and maximize uptake on the one hand, and efforts to promote quality, person-centeredness, and contraceptive autonomy on the other hand. Here, we pilot a novel measure of contraceptive autonomy, measuring it at two Health and Demographic Surveillance System sites in Burkina Faso. We conducted a population-based survey with 3,929 women of reproductive age, testing an array of new survey items within the three subdomains of informed choice, full choice, and free choice. In addition to providing tentative estimates of the prevalence of contraceptive autonomy and its subdomains in our sample of Burkinabè women, we critically examine which parts of the proposed methodology worked well, what challenges/limitations we encountered, and what next steps might be for refining, improving, and validating the indicator. We demonstrate that contraceptive autonomy can be measured at the population level but a number of complex measurement challenges remain. Rather than a final validated tool, we consider this a step on a long road toward a more person-centered measurement agenda for the global family planning community.
... Pour le prisonnier, se montrer 'sous contrôle et obéissant' est un moyen d'exprimer sa réhabilitation réussie afin d'intégrer à nouveau, et le plus rapidement possible, le monde extérieur (16). Pour cette raison, la recherche sur les prisonniers a été soit interdite soit très restreinte de peur que les pressions (de nature diverses) puissent contraindre les prisonniers à participer à la recherche contre leur volonté (17). D'un point de vue législatif, il y a peu de choses sur la réglementation de ces pratiques: 'the Common Rules' des USA relatif à la protection des sujets humains stipule simplement qu'«un investigateur devrait minimiser les risques de coercition (ou contrainte) et des incitations induites» (18). ...
Résumé
Compte tenu du lourd historique des abus entrepris sur les prisonniers dans le cadre de l’expérimentation médicale, il s’avère compréhensible que des mesures de protection supplémentaires aient été établies en vue de protéger cette catégorie sociale. Mais, le débat entre les détracteurs et les partisans de l’expérimentation médicale dans le milieu carcéral demeure toujours d’actualité. Cette note d’histoire, la quatrième d’une série sur l’expérimentation médicale sur les prisonniers, se propose de relater l’essentiel de l’argumentaire des deux parties, c’est-à-dire les détracteurs et les partisans de l’expérimentation médicale sur les prisonniers.
... As issues of coercion and consent within prison research are particularly complex (cf. McDermott, 2013;Moser et al., 2004), every effort was made to stress to participants that they should only take part in the research with full informed consent, and that they understood that they were free to withdraw at any time and only to answer questions that they wished to respond to. ...
Prison masculinities are evolving in a plurality of ways that have profound implications
for embodied masculinities within prison. However, previous literature has tended to
overlook the importance of prison gyms as cites of particular kinds of bodywork within
prison, something this paper seeks to address. Using interview data collected from two
high security men’s prisons in Britain, this paper examines accounts of the sorts of
bodies that prisoners aspire to achieve. This paper considers the ways in which the
prison context shapes both the ‘looking’ and the ‘doing’ of male prisoners’ bodies. It
also considers the ways in which specific manifestations of bodywork and associated
performances of certain embodied masculinities constitute agency and potential
resistance to the prison regime. Finally, this paper examines the ways in which context
specific constructs of ‘looking good’ constitutes an expression of agency and
potentially a form of resistance and/or compliance with prison regimes. Ultimately,
there emerges diverse sites of tension in the ways in which masculinities and bodies
interact within the prisons and prison gyms in particular that are the focus of this study.
... In cases where food, water, and other essential resources are lacking in a community that is being approached for research, turning down an offer to participate in research that is coupled with benefits (that may supply the population with necessities) is increasingly implausible. In many academic circles (including bioethics), conducting research on prison populations is an example of how a vulnerable group's consent process must be carefully monitored because there is a higher potential of coercion [Moser et al. 2004]. In the context of the different San communities in Southern Africa, vulnerability may become a concern when those who are subject to resource scarcity are approached for research. ...
In March 2017, the San Council of South Africa, together with the South African San Institute (SASI), launched the San Code of Research Ethics. The main impetus for this was a genomic research project that was published in Nature in 2010 by Schuster et al. [p.943] While the authors obtained formal ethical approval and claimed to have video recorded consent, this research was deeply problematic to the San. This was primarily due to numerous conclusions, details and terminology used in the published paper that the San regarded as “private, pejorative, discriminatory and inappropriate” [Schroeder et al. 2016]. The problematic aspects were reported about under a European Commission funded project named TRUST [Schroeder et al. 2016]. It was under this project that the Code was subsequently developed by traditional leaders of the !Xun, Khwe and !Khomani groups of San, in partnership with civil society organisations, legal representatives and universities. This has been a landmark development in the protection of Indigenous rights around research data.
In contrast to the above, Behrens [2013] finds that “[..] little academic work and few publications on bioethics reflect Indigenous African thought, philosophy or values” [p.33] With this chapter we would like to address the paucity of research on Indigenous bioethics, thereby substantiating and extending Behren’s findings. Referring to the above-mentioned case and Code, we argue for a perspective that balances good science with the protection and preservation of indigeneity. We will support this argument by critically examining some of the aspects that continue to make the San vulnerable to exploitation and harmful research practice.
... If behavior scientists working in culture and community hold access to certain resources that the members of the community or culture can access only by participating in the research, or the behavior scientist presents their approach as the "only good approach," then the members of the culture or community have no degrees of freedom and, therefore, no genuine choice. Prisoners, for example, may consent to research to avoid boredom, meet someone new, or appear cooperative so they will be treated better (Moser et al., 2004). To avoid coercive practices in research and practice, the behavior scientist must consider the degrees of freedom of the potential participants and community members (see also de Fernandes & Dittrich, 2018) and understand that multiple contingencies operate simultaneously for different entities. ...
Applications of behavior science to cultural and community phenomena often involve large-scale change aimed to address issues of social importance. Behavior scientists working in these areas face challenges that go beyond the currently adopted professional compliance code for practicing behavior analysts, the Code of Ethics adopted by the Association for Behavior Analysis International, and the other professional ethical codes many behavior scientists are guided by (e.g., American Psychological Association, the National Association of School Psychologists, etc.). One example of these challenges pertains to simply identifying the problem that needs to be addressed. This process requires collaboration with multiple stakeholders who may have differing values and concerns. A second example is evident in the process of identifying, selecting, and implementing interventions. This requires a sophisticated, culturally flexible repertoire and unique engagement skills that ensure that the perspectives, morals, and values of all members of the target community are considered and embraced in the recommended practices resulting from extensive collaboration. This chapter explores the aspirational values and key repertoires necessary for navigating the nuances confronting behavior scientists working in cultural and community settings to address significant social issues.
... While acknowledging that prisoners are a vulnerable population and that extra care should be taken to ensure that consent is freely given and informed, David J. Moser agrees that prisoners have become an "overprotected population" and that clinicians are subsequently underinformed about their specific needs. For more on this, see Andrew Cislo and Robert Trestman, "Challenges and Solutions for Conducting Research in Correctional Settings: The U.S. Experience" and David J. Moser et al. (2004), "Coercion and Informed Consent in Research Involving Prisoners." 7 Tim Holt and Tony Adams (1987) decried a similar practice in Great Britain when they noticed that medical students were travelling to developing countries and practicing skills "in ways which would be illegal in Britain," treating people in these countries as "a population of second-class citizens, who, because of their economic predicament, have no choice but to accept the second-rate skills of unqualified students, and who deserve to be taken advantage of in this way" (102). ...
This article focuses on medical trials performed by Dr. Albert Kligman on the inmates of Philadelphia's Holmesburg Prison between 1951 and 1974, which have been widely criticized as exploitative. I seek to investigate the mechanics behind the “ethical blind spot” that enabled the American medical community to laud Kligman for his efforts while simultaneously condemning the medical atrocities of the Holocaust and supporting the development of the Nuremberg Code. I argue that this nonrecognition hinges on a colonial logic by which certain populations are produced as waste, both rhetorically and materially. Drawing on the incarcerated men’s accounts included in Allen Hornblum’s books on the subject, I trace the process by which human beings come to be reclassified as natural resources and their exploitation recast as industrious cultivation.
... Human research ethics addresses the concepts of vulnerability in depth, some aspects of which are applicable here. For example, prisoners are treated differently with relation to informed consent compared to other adults in medical contexts [31][32][33]. This vulnerability comes from factors such as prisoners being placed in physical isolation and the power dynamics in the relationships with authority figures. ...
Technological advancements have provided militaries with the possibility to enhance human performance and to provide soldiers with better warfighting capabilities. Though these technologies hold significant potential, their use is not without cost to the individual. This paper explores the complexities associated with using human cognitive enhancements in the military, focusing on how the purpose and context of these technologies could potentially undermine a soldier’s ability to say no to these interventions. We focus on cognitive enhancements and their ability to also enhance a soldier’s autonomy (i.e., autonomy-enhancing technologies). Through this lens, we explore situations that could potentially compel a soldier to accept such technologies and how this acceptance could impact rights to individual autonomy and informed consent within the military. In this examination, we highlight the contextual elements of vulnerability—institutional and differential vulnerability. In addition, we focus on scenarios in which a soldier’s right to say no to such enhancements can be diminished given the special nature of their work and the significance of making better moral decisions. We propose that though in some situations, a soldier may be compelled to accept said enhancements; with their right to say no diminished, it is not a blanket rule, and safeguards ought to be in place to ensure that autonomy and informed consent are not overridden.
... Multiple studies have reported low levels of perceived coercion in correctional mental health settings (e.g. Moser et al., 2004;Poythress et al., 2002;Redlich et al., 2010;Rigg, 2002). However, perceived coercion and actual coercion are not necessarily the same, and an offender's account of the presence or absence of coercion does not necessarily indicate actual (un)coerced treatment (Rigg, 2002). ...
A wide variety of medications and neuromodulation techniques are being investigated to manage risk factors for deviant behavior. If certain neurointerventions can restore impaired moral decision-making and behavior in offenders, should the criminal justice system be permitted to use such neurointerventions and, if so, under which conditions? In this chapter, the authors argue that it can be ethical to offer neurointerventions to offenders as a condition of probation, parole, or sentence reduction, provided that the fulfillment of five minimal ethical conditions is verified on a case-by-case basis. The authors further argue that forcing neurointerventions as part of an offender’s sentence or as a postprison requirement is both ethically and practically problematic, with the possible exception of benign neurointerventions without side effects.
... [37][38][39][40] Additionally, the incarcerated environment can be considered inherently coercive. [41][42][43] Therefore, individuals deemed unable to provide informed consent could have requests for MOUD denied. ...
Opioid use disorder (OUD) is highly prevalent among persons who are incarcerated. Medication treatment for opioid use disorder (MOUD), methadone, buprenorphine, and naltrexone, is widely used to treat OUD in the community. Despite MOUD’s well-documented effectiveness in improving health and social outcomes, its use in American jails and prisons is limited.
Several factors are used to justify limited access to MOUD in jails and prisons including: “uncertainty” of MOUD’s effectiveness during incarceration, security concerns, risk of overdose from MOUD, lack of resources and institutional infrastructure, and the inability of people with OUD to provide informed consent. Stigma regarding MOUD also likely plays a role. While these factors are relevant to the creation and implementation of addiction treatment policies in incarcerated settings, their ethicality remains underexplored.
Using ethical principles of beneficence/non-maleficence, justice, and autonomy, in addition to public health ethics, we evaluate the ethicality of the above list of factors. There is a two-fold ethical imperative to provide MOUD in jails and prisons. Firstly, persons who are incarcerated have the right to evidence-based medical care for OUD. Secondly, because jails and prisons are government institutions, they have an obligation to provide that evidence-based treatment. Additionally, jails and prisons must address the systematic barriers that prevent them from fulfilling that responsibility. According to widely accepted ethical principles, strong evidence supporting the health benefits of MOUD cannot be subordinated to stigma or inaccurate assessments of security, cost, and feasibility. We conclude that making MOUD inaccessible in jails and prisons is ethically impermissible.
... Concerns have been raised in the literature regarding the possibility of coercion of incarcerated research participants (see, e.g. Moser et al., 2004). The Network goes to great lengths to guarantee voluntary participation and potential participants are informed that their decision to participate or not will not impact neither their access to care nor their general treatment in prison. ...
Purpose
The purpose of this paper is to compare the rates of chronic health conditions and lifestyle factors between Australian-born and overseas-born inmates and to uncover predictive relationships between lifestyle factors and health outcomes for both groups.
Design/methodology/approach
Data are presented from a cross-sectional study based on a sample of inmates from correctional sites in New South Wales (NSW). The inclusion of results here was guided by the literature relating to the healthy immigrant effect.
Findings
Results indicate that a higher proportion of Australian-born inmates consumed alcohol at higher levels and were more likely to smoke on a daily or almost daily basis than overseas-born inmates. Australian-born inmates were also more likely than overseas-born inmates to have been diagnosed with cancer, epilepsy or hepatitis C. Physical activity predicted the number of diagnoses for Australian-born inmates while physical activity and smoking frequency predicted the number of diagnoses for overseas-born inmates.
Practical implications
Overseas-born inmates make up a considerable portion of the prison population in NSW. A better understanding of those health and lifestyle factors that distinguish them from Australian-born inmates provides important insight regarding health promotion and the planning of service provision for those providing health care in this space.
Originality/value
Comparison of the health of immigrant and native-born prison inmates has not been undertaken before and promises to provide important information regarding those factors that distinguish a sizeable minority in the prison population.
... Concerns about the quality of informed consent have further deepened with a recent increase in the volume of genomics research in low resource settings [10][11][12][13]. Common questions shaping this discussion pertain to the type and amount of information study participants should be given [14,15]; the best means to deliver such information [16][17][18][19][20]; the language of delivering such information and concerns about accuracy of translation of technical terms to enable sufficient comprehension [21][22][23][24]; the problem of vulnerability that usually conceals lack of freedom [25][26][27][28] among others. A growing body of work has been conducted recently in various local settings on these and related challenges and has produced additional and more localized evidence-based guidance on how valid consent ought to or could be obtained [2,[29][30][31][32][33][34][35][36]. ...
Background:
Despite existing international, regional and national guidance on how to obtain valid consent to health-related research, valid consent remains both a practical and normative challenge. This challenge persists despite additional evidence-based guidance obtained through conceptual and empirical research in specific localities on the same subject. The purpose of this paper is to provide an account for why, despite this guidance, this challenge still persist and suggest conceptual resources that can help make sense of this problem and eventually mitigate it'.
Main body:
This paper argues that despite the existence of detailed official guidance and prior conceptual and empirical research on how to obtain valid consent, the question of 'how to obtain and ascertain valid consent to participation in health-related research' cannot always be fully answered by exclusive reference to pre-determined criteria/guidance provided by the guidelines and prior research'. To make intelligible why this is so and how this challenge could be allayed, the paper proposes six concepts. The first five of these are intended to account for the persistent seeming inadequacies of existing guidelines. These are fact-skepticism; guideline insufficiency; generality; context-neutrality and presumptiveness. As an outcome of these five, the paper analyzes and recommends a sixth, called bioethical reflexivity. Bioethical reflexivity is reckoned as a handy tool, skill, and attitude by which, in addition to guidance from context-specific research, the persisting challenges can be further eased.
Conclusions:
Existing ethical guidelines on how to obtain valid consent to health-related research are what they ought to be - general, presumptive and context-neutral. This explains their seeming inadequacies whenever they are being applied in concrete situations. Hence, the challenges being encountered while obtaining valid consent can be significantly eased if we appreciate the guidelines' nature and what this means for their implementation. There is also a need to cultivate reflexive mindsets plus the relevant skills needed to judiciously close the unavoidable gaps between guidelines and their application in concrete cases. This equally applies to the gaps which cannot be filled by reference to additional guidance from prior conceptual and empirical research in specific contexts.
... Prisoners are rarely afforded any options or choices within a prison context so may feel little choice as to whether to take part in the research when requested. Furthermore, prisoners are traditionally inclined to contribute to research activities largely due to their desire to occupy their time within the institution, to alleviate boredom and to spend time talking to someone viewed as outside of the core prison staff (Moser et al., 2004). ...
Prisons provide an important public health opportunity to improve the health of a hard-to-reach population. However, the prison as a place for health promotion requires greater attention. Using De Certeau's concept of tactics, semi-structured interviews with 35 young men who had screened as low on an anxiety and depression scale, illustrate how they stitch together discrete tactics to navigate the prison system and mitigate the risks to their health and wellbeing. These involve a process of being vigilant to the cracks in the system whilst appropriating objects and seeking out spaces of comfort. Understanding imprisonment in this nuanced approach provides greater insights into the interplay of health and place with the potential to inform context-relevant practice and policy.
... 2.Other studies have found that prisoners participate in prison research to avoid boredom or help society (Moser et al., 2004). 5.In your own words, and in whichever style you wish to share it in, please describe your experience of LWOP. ...
This article examines how we might best examine the most extreme and inaccessible corners of imprisonment. Drawing on a study of life imprisonment without parole (LWOP) in California, this article argues that prisoners’ letters can shed exceptional light on the hidden and unspoken experiences of imprisonment. It provides an in-depth methodological and reflective outline of how to use prisoners’ letters, a familiar tactic in prison researchers’ and advocates’ toolkits, but a research implement that is rarely discussed explicitly. By better understanding how to do prison research with letters and the emotions these might provoke in the process, this article demonstrates the very specific and distinct value of the method, in particular how letters can contribute to knowledge about extreme penal severity.
... Prisoners, defined as any individual involuntarily confined or detained in a penal institution, are considered as "vulnerable" because they may be coerced into study participation, and also, due to both cognitive and psychiatric disorders, they can show an impaired ability to provide voluntary informed consent [28]. To protect this population, the Office for Human Research Protections has stipulated federal regulations according to which the only studies that may involve prisoners are those with independent and valid reasons for involving them (table 4) [25]. ...
Current biomedical research on human subjects requires clinical trial, which is defined as “any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions [i.e. drugs, cells or other biological products, surgical procedures, devices] to evaluate the effects on health outcomes” [1]. In our modern ethical conception, all research conducted on humans must be pre-emptively accepted by the subjects themselves through the procedure known as informed consent, which is a process by which “a subject voluntarily confirms his or her willingness to participate in a particular trial, after having been informed of all aspects of the trial that are relevant to the subject’s decision to participate”, as stated in the International Council for Harmonisation Good Clinical Practice guidelines [2]. Informed consent is documented by means of a written, signed and dated informed consent form. This form is required in the following cases: 1) when the research involves patients, children, incompetent/incapacitated persons, healthy volunteers, immigrants or others (e.g. prisoners); 2) when the research uses/collects human genetic material, biological samples or personal data [3].
... 2 Subjective coercion as measured through the coercion ladder, a structured interview developed for Indian healthcare settings ( Gowda et al., 2017), or the Coercion Experience Scale (CES) (Bergk et al., 2010). 3 Perceived coercion measured through MacArthur perceived coer- cion scale (MAES) ( Gardner et al., 1993) or the Iowa Coercion Questionnaire (ICQ) (Moser et al., 2004). ...
Background: The Indian Mental Health Care Act 2017 (MHCA -2017) advocates the duty to provide treatment in the least coercive manner. Little data exists on how Indian patients perceive coercion in medical settings.
Aims: To study the prevalence of restraint in a Indian psychiatric inpatient unit, and to examine the level of perceived coercion correlating to various forms of restraint.
Methodology:
This is a hospital based prospective observational study. Two hundred patients were recruited through computer generated random number sampling. In eligible subjects, demographic and clinical data, restraints used and assessments related to perceived coercion were completed within 3 days of admission. Perceived coercion was reassessed at the time or within 3 days before discharge.
Results:
In 66.5% one or more restraint measures were used, physical restraints in 20%, chemical restraints in 58%, seclusion in 18%, and involuntary medication in 32%. ECT is associated with the lowest level of perceived coercion followed by isolation/seclusion, chemical restraint, involuntary medication and physical restraint. Male gender, being married, rural background, low socioeconomic status, having a mood disorder, and alcohol or drug dependence was associated with an increased risk of physical or chemical restraint. Having a mood disorder, being from a rural area and a lower socioeconomic status was associated with being subjected to more than one form of coercion.
Conclusion:
Restraint measures are more prevalent in psychiatric hospital care in India than in Europe. Physical restraint is particularly associated with higher perceived coercion.
... 121 While prison populations have been growing and there is an increasing need to study the mental and physical health factors that impact incarcerated individuals, there is reluctance on the part of researchers to use prisoners in studies due to the inherent ethical and legal considerations of using a sample group under the control and influence of prison authorities. 122 Experts have recommended changes be made to the regulations controlling medical research involving prisoners to allow researchers more opportunity to look into the factors contributing to the growing prison population. 123 Studies have found that prisoners and wards of the state are not unduly influenced by being under governmental guardianship 124 and that their consent to participate in medical research should not be automatically viewed with suspicions of coercion. ...
... As issues of coercion and consent within prison research are particularly complex (cf. McDermott 2013; Moser et al. 2004), every effort was made to stress to participants that they should only take part in the research with full informed consent, and that they understood that they were free to withdraw at any time and only should answer questions that they wished to respond to. ...
According to the 11th World Prison Brief, more than 9 in 10 (93%) of the world’s prisoners are male (Warmsley 2016). While over recent years there has been a small but significant increase in the proportion of female prisoners globally, male prisoners still constitute the vast majority of prisoners in all 223 prison systems in independent countries and dependent territories considered in the World Prison Brief. Globally, among those countries where data is available, the highest proportion of male prisoners is found in African countries, in which 97% of the prison population is male, while in the Americas, this figure is at its lowest, at 90% of the prison population in the USA and 92% in the remainder of the Americas (Warmsley 2015). Thus, for all of the jurisdictions which feature within the chapters of this book, this picture of male predominance within penal systems is consistently reflected.
... To assess participants' sense of personal control over their decision to enroll, we adapted the MacArthur Perceived Coercion Scale (PCS), a validated scale measuring a person's perceptions of coercion (Gardner et al., 1993). Initially developed to measure perceived coercion during admission to a psychiatric treatment unit, the PCS has been adapted for a variety of settings (Cusack, Steadman, & Herring, 2010;Rain, Steadman, & Robbins, 2003a;Rain et al., 2003b;Steadman et al., 2001), including the decision to participate in research (Appelbaum et al., 2009a;Appelbaum, Lidz, & Klitzman, 2009b;Edens et al., 2011;Festinger et al., 2011;Moser et al., 2004). ...
Individuals must feel free to exert personal control over decisions regarding research participation. We present an examination of participants’ perceived personal control over, as well as reported pressures and threats from others, influencing their decision to join a study assessing the effectiveness of extended-release naltrexone in preventing opioid dependence relapse. Most participants endorsed a strong sense of control over the decision; few reported pressures or threats. Although few in number, participants’ brief narrative descriptions of the pressures and threats are illuminating and provide context for their perceptions of personal control. Based on this work, we propose a useful set of tools to help ascertain participants’ sense of personal control in joining research.
... However, incarcerated populations commonly suffer numerous social and health-related vulnerabilities with potentially limiting effects on comprehension, some of which may not be reflected in reading skills. These include low educational attainment and literacy [23,24], high rates of mental illness and learning disabilities, and health-risk factors related to temporarily or permanently impaired cognition (e.g., substance use, traumatic brain injury) [25][26][27]. Among older incarcerated persons, age-related conditions such as sensory impairments (e.g., hearing, vision) and cognitive impairments (including dementia) are disproportionately common and are present at relatively young ages [28][29][30]. ...
Correctional health research requires important safeguards to ensure that research participation is ethically conducted. In addition to having disproportionately low educational attainment and low literacy, incarcerated people suffer from health-related conditions that can affect cognition (e.g., traumatic brain injury, substance use disorders, mental illness). Yet modified informed consent processes that assess participants' comprehension of the risks and benefits of participation are not required by relevant federal guidelines. A push to assess comprehension of informed consent documents is particularly timely given an increase in demand for correctional health research in the context of criminal justice reform. We argue that comprehension assessments can identify persons who should be excluded from research and help those who will ultimately participate in studies better understand the risks and benefits of their participation.
... Due to federal regulations, incarcerated individuals are considered a vulnerable population; thus, researchers must provide documentation and justification to Institutional Review Boards and meet strict regulations to ensure the welfare of participants. This process has contributed to challenges in conducting research with people in prison (Cislo & Trestman, 2013;Moser et al., 2004). ...
The research process within prisons has largely considered researchers' perspectives. Only one known study explicitly examined incarcerated persons' perceptions and no known studies have explored incarcerated persons' experiences with research on sensitive topics. This study examines incarcerated women's experiences with participating in research on victimization. A thematic analysis was conducted on responses to open-ended questions about participating in a research study from 227 women in two prisons who participated in a study about victimization. Women prisoners were overwhelmingly positive about participating in the research study with the vast majority willing to participate in a future study. Participants believed participating in the study provided opportunities for them to share their story, heal, reflect, grow, and help others. Some women mentioned that discussing certain topics created uncomfortable emotions and memories. Participants perceived benefits of participating in research. Implications for research in prisons are presented.
... De acuerdo con el protocolo ético en las investigaciones, es nuestra responsabilidad como investigadores evitar que sean presionados a participar. Un estudio buscó identificar la capacidad de toma decisiones y susceptibilidad a coerción en participantes encarcelados (Moser et al, 2004). Se utilizó un grupo control y otro experimental de individuos confinados con problemas de salud mental que iban a ser reclutados para una prueba de drogas hipotéticas. ...
During 2013 the prison population of Puerto Rico was composed of approximately 13,000 persons. Documents describing the enablers and constraints for research related to mental health in prisons in the existing literature are scarce. The present work consisted of identifying elements that facilitate or hinder research in prisons identified by the members of the research team of a project that aimed to validate a scale to measure stress in prisoners. In this article, we present the facilitating and challenging elements of research work in prison, which can help to inform future research in this particular scenario to achieve satisfactory results.
The quantitative study of prisoners’ victimisation is not new. Although many older works exist, numerous new studies have also been published in the past decade. With an ever-changing prison system, the measurement of victimisation in detention will always remain relevant. However, the problem with current studies is the lack of standardisation of measurement methods and methodological transparency, turning national and cross-country comparisons virtually impossible. Yet we know from research on psychological and cognitive processes that certain methods in questionnaire design are better than others. Studies on victimisation are also more susceptible to additional threats, such as nonresponse, which may be amplified in a prison context. This chapter reviews the problems in prior research and the unique challenges in designing a victimisation study for prisoners. It then draws on the methodological literature to formulate recommendations for better standardisation of victimisation studies in prisons.
Neurolaw is an area of interdisciplinary research on the meaning and implications of neuroscience for the law and legal practices. This Element addresses the potential contributions of neuroscience, and the brain sciences more generally, to criminal justice decision-making and policy. It distinguishes between three different areas and domains of investigation in neurolaw: assessment, intervention, and revision. The first concerns brain-based assessments, which may be used for predicting future violence, lie detection, judging legal insanity, and the like. The second concerns potential treatments and other interventions that aim at rehabilitating criminals and/or preventing crime before it occurs. The third investigates the ways that neuroscience may impact the law by changing or revising commonsense views about human nature and the causes of human action.
Sexual violence within prisons is a complex issue. The Prison Rape Elimination Act identifies standards to guide the provision of care to meet the medical and forensic needs of individuals who experience sexual assault (SA) while incarcerated. The standards include access to care by a Sexual Assault Nurse Examiner (SANE) whenever possible. Telehealth is one solution to ensure expert SANE access. This brief report addresses the pre-examination concerns/worries and immediate post-examination perceptions and experiences of six individuals who experienced SA while incarcerated. Findings show resolution of pre-examination worries, high satisfaction with care, high telehealth acceptability rates, and universal endorsement that examinations should occur outside of correctional facilities. Although not generalizable, this report provides preliminary insight into care in an understudied population with unique health care needs.
The first of three volumes, the five sections of this book cover a variety of issues important in developing, designing, and analyzing data to produce high-quality research efforts and cultivate a productive research career. First, leading scholars from around the world provide a step-by-step guide to doing research in the social and behavioral sciences. After discussing some of the basics, the various authors next focus on the important building blocks of any study. In section three, various types of quantitative and qualitative research designs are discussed, and advice is provided regarding best practices of each. The volume then provides an introduction to a variety of important and cutting-edge statistical analyses. In the last section of the volume, nine chapters provide information related to what it takes to have a long and successful research career. Throughout the book, example and real-world research efforts from dozens of different disciplines are discussed.
Importance:
Few studies are available on informed consent (IC) among detained persons, even with ethics being a critical aspect of prison research. In IC research, audiovisual material seems to improve understanding and satisfaction compared with conventional paper-based material, but findings remain unclear.
Objective:
To compare audiovisual and paper-based materials for 1-time general IC for research in prisons.
Design, setting, and participants:
This cross-sectional randomized clinical trial was conducted in 2 corrections facilities in Switzerland (an adult prison and a juvenile detention center). The study was conducted from December 14, 2019, to December 2, 2020, in the adult prison and from January 15, 2020, to September 9, 2021, in the juvenile detention center. In the adult prison, study participation was offered to detained persons visiting the medical unit (response rate, 84.7%). In the juvenile detention center, all newly incarcerated adolescents were invited to participate (response rate, 98.0%).
Interventions:
Participants were randomized to receive paper-based conventional material or to watch a 4-minute video. Materials included the same legal information, as required by the Swiss Federal Act on Research Involving Human Beings.
Main outcomes and measures:
The main outcome was acceptance to sign the IC form. Secondary outcomes included understanding, evaluation, and time to read or watch the IC material.
Results:
The study included 190 adults (mean [SD] age, 35.0 [11.8] years; 190 [100%] male) and 100 adolescents (mean [SD] age, 16.0 [1.1] years; 83 [83.0%] male). In the adult prison, no significant differences were found between groups in acceptance to sign the IC form (77 [81.1%] for paper-based material and 81 [85.3%] for audiovisual material; P = .39) and to evaluate it (mean [SD] correct responses, 5.09 [1.13] for paper-based material and 5.01 [1.07] for audiovisual material; P = .81). Understanding was significantly higher in the audiovisual material group (mean [SD] correct responses, 5.09 [1.84]) compared with the paper-based material group (mean [SD] correct responses, 4.61 [1.70]; P = .04). In the juvenile detention center, individuals in the audiovisual material group were more likely to sign the IC form (44 [89.8%]) than the paper-based material group (35 [68.6%], P = .006). No significant difference was found between groups for understanding and evaluation. Adults took a mean (SD) of 5 (2) minutes to read the paper material, and adolescents took 7 (3) minutes.
Conclusions and relevance:
Given the small benefit of audiovisual material, these findings suggest that giving detained adults and prison health care staff a choice regarding IC material is best. For adolescents, audiovisual material should be provided. Future studies should focus on increasing understanding of the IC process.
Trial registration:
ClinicalTrials.gov Identifier: NCT05505058.
The value of and the need for rich data for criminal justice research is increasingly apparent, especially following recent restrictions on primary data collection due to COVID-19. Whilst the benefits of using administrative data for research are well established, less understood are the perspectives of data contributors and their expectations for the ethical governance and use of these data. This study describes the findings from a preliminary study comprising four focus groups with a total of seventeen adult males serving sentences in a Category A prison in England. Participants were asked to offer opinions about the possibility of making survey data collected from them as part of the prison inspection process more widely accessible, beyond the organizational priorities for which it was initially collected. Generally, participants were content for survey data to be shared with recipients who intended to use the data to bring about change within prisons; this aligns with the purpose for data collection. Participants were opposed to data being made accessible to recipients who might produce spurious findings. We discuss implications for the future accessibility of a vast wealth of prisoner survey data in England and Wales and highlight the importance of consultation with incarcerated persons on this subject.
This chapter reinforces the principle that research can be about working with and alongside, not ‘on’, people and communities. Despite widespread support for this from those working in health research (Green et al., Health promotion. Planning and strategies, Sage, 2019), there has been reluctance for the translation of these ideas into prison contexts—this, it could be surmised, is for several reasons, including: security concerns and a predominance historically for more quantitative approaches in prison health research. This chapter seeks to outline what participatory research means in prison and moreover to exemplify this using contemporary examples. The added value of participatory methods within prison research will be discussed before the challenges, and ways in which they can be managed, are outlined.
Although the fluid, performed nature of gender is well established, constructions of masculinity have commonly been linked to practices that are ‘toxic’ to health, particularly in relation to ‘hyper-masculine’ ideals. In this chapter, we argue that masculinities can be aligned with positive health behaviours not exclusively the health practices which are damaging to health. We consider how masculinities are performed over the course of pilot deliveries of a health promotion programme (Fit for LIFE), in a largely male environment, namely two Scottish prisons. We explore performances of hegemonic and inclusive masculinities. In so doing, we aim to advance masculinities theory through moving from a binary, at times oppositional, orientation to a more nuanced reading of masculinity within a specific gendered context. Additionally, we highlight aspects of change in the performance of prison masculinities within the context of the delivery of the Fit for LIFE programme, as in the men’s weight management programme—Football Fans in Training (FFIT) which inspired it. This illustrates the potential for health promotion interventions to provide new opportunities for performances of masculinity that positively contribute to health in prison.
Aim: This study investigated the prison and post-prison-related healthcare experiences of male prisoners in order to better inform future policy. Design: The study was a qualitative, phenomenological study using interpretive phenomenology. Methods: Between April 2014 and April 2015. Narrative data were gathered in semi-structured interviews with N = 29 males within six weeks of their release from prison. Interviews were audio-recorded and transcribed (n = 9) or detailed field notes were made (n = 20) dependent on participant preference. Data were analysed using inductive phenomenological analysis. Results: Analysis revealed four themes: (1) Meaning of health (2) Access to healthcare (3) The obfuscatory organisation (4) Vulnerability and hope. Conclusion: The effectiveness of policy changes that were intended to ensure equity of access to NHS services for prisoners is questionable. A renewed commitment to, and tangible progress towards, providing equivalency in healthcare for prisoners is required.
This chapter outlines a health literacy framework to explore the prison as a place for supporting health and wellbeing and draws upon findings from a doctoral research project within a single English prison for young adults. Health literacy describes the ‘cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health’ (WHO, 7th global conference on health promotion, 2009). Through a series of mixed-methods studies, the chapter highlights the numerous individual, social and structural barriers faced by young men in prison to develop their health literacy, but also reveals the ways they attempt to reclaim some control over their physical, mental and emotional needs. The chapter further presents a group-based model for strengthening health literacy, highlighting what could be achieved to support more health-literate environments.
Objectives
This study examined the extent, range and nature of the published literature, prison policies and technical guidance relating to the ethical conduct of health research in prisons in low- and middle-income countries (LMICs).
Study design
Scoping Review.
Methods
We adhered to the five stages of the scoping review iterative process: identifying the research question, identifying relevant studies, study selection, charting the data, and collating, summarizing and content analysis of polices. Disagreements around allocation of content were resolved through team discussion. We also appraised the quality of the included articles.
Results
We included nine records that examined the ethical aspects of the conduct of health research in prisons in LMICs; eight of these were peer-reviewed publications, and one was a toolkit. Despite the unique vulnerabilities of this group, we could find no comprehensive guidelines on the ethical conduct of health research in prisons in LMICs.
Conclusions
The majority of the world's imprisoned populations are in LMICs, and they have considerable health needs. Research plays an important role in addressing these needs and in so doing, will contribute to the achievement of the Sustainable Development Goals. With regards to health research, imprisoned people in LMICs are ‘left behind’; there is a lack of clear, prison-focused guidance and oversight to ensure high quality ethical health research so necessary in LMICs. There is an urgent need for prison health experts to work with health research ethics experts and custodial practitioners for procedural issues in the development of prison-specific ethical guidance for health research in LMICs aligned with international standards.
The reprinting of Kenneth Mellanby’s Human Guinea Pigs is an important contribution to understanding our past and interrogating our present (see Reverby 2012 on the use of historical events in research ethics to inform contemporary decisions). The volume invites us to consider human research practices in the United Kingdom in the early part of the twentieth century. Some of Mellanby’s claims and practices contrast sharply with contemporary research ethics expectations. Yet, the volume also reveals a scientist – Kenneth Mellanby – attuned to many of the ethical concerns typically associated with human research today. Mellanby shows an eagerness to conduct socially valuable, scientifically valid research while respecting and protecting the subjects/participants in his investigation, ensuring that the risks his research posed are appropriate relative to the benefits, and avoiding the unfair use of conscientious objectors. Mellanby’s text is particularly compelling in calling us to introspection because Human Guinea Pigs reads like a story. Thus, in addition to serving as an important window into the history of human research and inviting us to consider contemporary research practices, the volume serves as a reminder of the importance of narrative in bioethics.
The practice of paying prisoners to for their participation in research has long been debated, and the controversy is reflected in the differing policies in the U.S. prison systems. Empirical study of financial payments to inmates who enroll in research has focused on whether this practice is coercive. In this study, we examined whether monetary incentives have the potential to be unduly influential among fifty HIV‐positive prisoners. The majority of prisoners surveyed believed that inmates should receive some compensation for their involvement in research and disagreed with statements suggesting that the offer of payment constitutes undue influence. However, a sense of potentially being susceptible to undue influence was significantly higher among participants who had spent a longer time in prison and had less education. Overall, our findings suggest that most prisoners feel that they would be able to make a decision about research enrollment that is not solely based on an offer of monetary payment.
This chapter builds on chapter nine by considering some of the groups that have been classified as vulnerable in terms of their participation in health research. In this chapter, we attend to these different groups and consider the types of issues that collecting naturally occurring data raises, practically and ethically. The benefits and challenges of collecting naturally occurring data from these groups is critically considered, with recommendations for practice offered.
In this chapter, I explore the possible contribution that ethnography can make to public health research within prison contexts. Prison ethnography literature raises questions relating to the extent to which ethnographic methods have the potential to illuminate what is often a hidden and difficult to access context. Such questions as they relate to public health within prisons are reflected on in this chapter, through the description of a research project that explored the experience of a public health intervention delivered in a number of prison gyms. In particular, I consider the ways in which my positionality as an ethnographic researcher determined the sorts of data I was able to collect to evaluate the Fit for LIFE programme.
Prison masculinities are manifest themselves in a plurality of ways (Maycock et al., Manuscript under review) that include hegemonic (Connell 1995; Connell and Messerschmidt 2005) as well as inclusive (Anderson 2008, 2009; Anderson and McGuire 2010) masculinities. Such presentations have implications for embodied masculinities within prison. Following Gill et al. (2005), I consider a range of bodily modifications, reflecting Shilling’s (2003) insight that the more we know about bodies, the more it is possible to change them. These embodied efforts by the men in this study make significant contributions to the performance of ‘emergent masculinities’ (Inhorn and Wentzell 2011) within prison. The importance of bodies for constructs of masculinity strengthens the view that ‘looking’ masculine is critical, in addition to ‘doing’ masculinity (Connell 1983; Drummond 2011). This chapter considers the ways in which the prison context shapes both the ‘looking’ and the ‘doing’ of male prisoners’ bodies, using data collected from two high-security men’s prisons in Britain. I initially examine accounts of the sorts of bodies that prisoners desire and aspire to achieve. I then consider the ways in which specific manifestations of ‘bodywork’ (Dworkin 1974) and associated performances of certain embodied masculinities constitute resistance to the prison regime.
This chapter explores the limitations of the ‘rational’ and ‘capable’ perspective to understanding healthy volunteer involvement in clinical drug trials. The chapter considers sociological approaches to studying risk and rationality. It questions the uncritical ways in which rational choice theory within a liberal economic context has influenced conceptions of individuals in bioethics’principles about human involvement in clinical drug trials. In conclusion, I show the limitations of the common approaches to understanding healthy volunteer involvement in clinical drug trials.
Although the recent development of a measure for perceived coercion has led to great progress in research on coercion in psychiatric settings, there still exists no consensus on how to measure the existence of real coercive events or pressures. This article reports the development of a system for integrating chart review data and data from interviews with multiple participants in the decision for an individual to be admitted to a psychiatric hospital. The method generates a "most plausible factual account" (MPFA). We then compare this account with that of patients, admitting clinicians and other collateral informants in 171 cases. Patient accounts most closely approximate the MPFA on all but one of nine dimensions related to coercion. This may be due to wider knowledge of the events surrounding the admission.
Three instruments assessing abilities related to legal standards for competence to consent to treatment were administered to 6 groups: patients recently hospitalized for schizophrenia, major depression, and ischemic heart disease, as well as three groups of non-ill persons in the community who were matched with the hospitalized patients on age, gender, race, and socioeconomic status. Significant impairments in decisional abilities were found for only a minority of persons in all groups. Both the schizophrenia and depression groups manifested poorer understanding of treatment disclosures, poorer reasoning in decision making regarding treatment, and a greater likelihood of failing to appreciate their illness or the potential benefits of treatment. Deficits were more pronounced, however, among patients with schizophrenia. Implications are discussed for policy designed to protect the rights and welfare of patients with mental illness who are at risk of incompetent refusal or consent when making treatment decisions.
The feasibility, reliability, and validity of a new instrument, the MacArthur Competence Assessment Tool-Treatment (MacCAT-T), which was developed for use by clinicians, was tested. The instrument assesses patients' competence to make treatment decisions by examining their capacities in four areas--understanding information relevant to their condition and the recommended treatment, reasoning about the potential risks and benefits of their choices, appreciating the nature of their situation and the consequences of their choices, and expressing a choice.
The MacCAT-T and instruments to measure symptom severity were administered to 40 patients recently hospitalized with schizophrenia or schizoaffective disorder and 40 matched subjects in the community without mental illness.
A high degree of ease of use and interrater reliability was found for the MacCAT-T. Overall, the hospitalized patients performed significantly more poorly than the community subjects on understanding and reasoning, although many patients performed as well as community subjects. Poor performance was related to higher levels of some psychiatric symptoms, such as conceptual disorganization, hallucinations, and disorientation.
The MacCAT-T offers a flexible yet structured method with which caregivers can assess, rate, and report patients' abilities relevant for evaluating competence to consent to treatment.
Legal and extra-legal coercion are pervasive in mental hospital admission and there are sharp disputes about its appropriate role. This article presents two scales for measuring psychiatric patients' perceptions of coercion during hospital admission and reports data on these scales' internal consistency. We measure patients' perceptions of coercion by asking questions, in either an interview or questionnaire format, about their experience of lack of control, choice, influence, and freedom in hospital admission. Patients' responses to questions about their perceptions of coercion were highly internally consistent. The internal consistency of the scale was robust with respect to variation in site, instrument format, patient population, and interview procedure. Correspondence analysis was used to construct two numerical scales of perceived coercion.
The adequacy of subjects' informed consent to research is the focus of an important public and professional debate. The potential impairment of decisional capacity in persons with schizophrenia is central to the discussions. This study ascertains the decisional capacity for informed consent in schizophrenic research subjects, to determine if reduced capacity relates to specific aspects of psychopathologic features and to test the hypothesis that reduced capacity can be remediated with an educational informed consent process.
Decisional capacity was assessed for 30 research subjects with schizophrenia and 24 nonill (normal) comparison subjects. Measures of psychopathologic features and cognition were obtained for the subjects with schizophrenia. Subjects who performed poorly on the decisional capacity measure received an educational intervention designed to improve their ability to provide informed consent and were then retested.
The patient group did not perform as well as the controls on initial decisional capacity assessment. Poor performance was modestly related to the extent of symptoms but robustly related to cognitive impairments. Following the educational intervention, the performance of subjects with schizophrenia was equal to that of the nonill comparison group.
Many persons with schizophrenia may be challenged by the cognitive demands of an informed consent process for research participation. In many cases, their reduced capacity can be compensated by a more intensive educational intervention as part of the informed consent process.
The degree to which people with psychiatric symptoms and cognitive dysfunction can provide informed consent to participate in research is a controversial issue. This study was designed to examine the capacity of subjects with schizophrenia and subjects with HIV to provide informed consent for research participation and to determine the relationships among cognitive dysfunction, psychiatric symptoms, and decisional capacity.
Twenty-five men and women with a DSM-IV diagnosis of schizophrenia and 25 men and women with HIV were recruited. The groups were compared in terms of neuropsychological functioning, psychiatric symptoms, and ability to provide informed consent to a hypothetical drug trial.
Eighty percent of the subjects with schizophrenia and 96% of the HIV-positive subjects demonstrated adequate capacity to consent to the hypothetical drug trial, but subjects in the schizophrenia group had significantly lower scores on two of the four aspects of decisional capacity. For the subjects with schizophrenia, neuropsychological functioning and psychiatric symptoms (e.g., apathy and avolition), but not psychotic symptoms (e.g., hallucinations and delusions), were significantly associated with decisional capacity.
The majority of subjects who are recruited and willing to participate in schizophrenia or HIV research will have adequate capacity to provide consent. Cognitive dysfunction and the symptoms shown to be associated with impaired decisional capacity are not unique to schizophrenia and may occur with many other forms of illness. These findings underscore the importance of considering how decisional capacity will be assessed in all types of research, regardless of the specific condition being studied.
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