As a 2006 Institute of Medicine report highlights, surprisingly little empirical attention has been paid to how prisoners arrive at decisions to participate in modern research. With our study, we aimed to fill this gap by identifying a more comprehensive range of factors as reported by prisoners themselves during semistructured interviews. Our participants described a diverse range of motives, both favoring and opposing their eventual decision to join. Many are well-recognized considerations among nonincarcerated clinical research participants, including a desire for (...) various forms of personal benefit, altruism, and concern about study risks and inconveniences. However, a number of influences seem unique to prisoners. Participants did not report that they were not coerced into enrolling, and they have even been under pressure not to enroll. However, many sought to enroll in order to obtain access to better health care, raising a concern about whether they were unfairly exploited. (shrink)

Background: Therapeutic misconception, the misunderstanding of differences between research and clinical care, is widely prevalent among non-incarcerated trial participants. However, little attention has been paid to its presence among individuals who participate in research while incarcerated. Methods: This study examined the extent to which 72 incarcerated individuals may experience therapeutic misconception about their participation in one of six clinical trials, and its correlation with participant characteristics and potential influences on research participation. Results: On average, participants endorsed 70% of items suggestive (...) of therapeutic misconception. The tendency toward therapeutic misconception was significantly higher among African Americans and Latinos compared to Whites, among older and less educated participants, and among enrollment in a substance-abuse-related trial; it was also correlated with a belief that the trial was the only way to obtain needed treatment. Conclusions: Therapeutic misconception may be particularly high among select incarcerated individuals and is associated with a perceived lack of treatment options. Further examination of therapeutic misconception among incarcerated research participants is needed. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Psychiatric Hospitalization—Bridging the Gap Between Respect and ControlPaul P. ChristopherIntroductionThis issue of Narrative Inquiry in Bioethics offers varied and somewhat unique perspectives on the experience of psychiatric hospitalization. This commentary highlights a number of salient themes that emerge from reading these essays and attempts to explore how they relate to the broader academic literature on psychiatric hospitalization, particularly with regard to ethical considerations. In reading these narratives, each several (...) times, I was repeatedly struck by the courage required of the authors, both to share their stories publicly and to endure the challenges that the writing process no doubt demanded of them—revisiting and suspending themselves in deeply emotional and, at times, traumatic experiences in order to share the most compelling narrative. Their hard work clearly paid off—the stories are at once intimate and indelible. Still, in many instances, I found myself wanting to know more; to enter the story and sit with the individual through these events; to ask what they were thinking or feeling in a particular situation; to see and hear the world in which they found themselves. Such is the nature of good story telling—the reader, left with the lingering vision created in his mind, turns over the last page, eagerly hoping for more.Narrative ThemesI. Loss of Autonomy or ControlPerhaps the most notable theme had to do with the loss of control or freedom that followed from hospitalization. On first consideration, it may seem odd that this issue appears so often since patient autonomy constitutes one of the fundamental principles of medical ethics. Only under specific circumstances—e.g., when there is a risk of imminent harm—may autonomy be curtailed, and even then only to the extent that is minimally necessary. Yet, as these narratives highlight, there are a multitude of ways in which psychiatric hospitalization engenders actual or perceived restrictions in freedom (Newton-Howes & Mullen, 2011).Consistent with prior research (Goodwin et al., 1999), many of the authors describe a fear or the actual experience of not being able to leave the hospital freely, even when the admission seems to have been voluntary. For example, one writer worries, “I was so afraid that if I ever went ‘in,’ I would never get ‘out’... I thought I would never taste freedom again... alive.” Another describes:When it came time for my possible discharge they told me that I might not get discharged because I was ‘acting up the previous evenings.’ My anxiety level at this point went through the roof. The only reason I was discharged was because my father knew some politicians. If not [End Page 29] for him I would have been a patient there for perhaps years and my life would have been ruined.A third gives this example: “When I asked to sign the form to leave after three days, [the psychiatrist] told me if I did that she would have me committed.” Another writer fears not having any control of how the psychiatrist might approach the treatment: “... I was totally vulnerable... would the doctors blame me, drug me, shock me, kill me?”Somewhat surprising, however, was the fact that so few of the narratives take issue with the decision to hospitalize. This omission is especially striking in light of the fact that prior reports consistently note that a substantial minority (up to nearly half) of voluntarily admitted patients nevertheless experience their admission as coerced (Bonsack & Borgeat, 2005; Hiday et al., 1997; Katsakou et al., 2010; Rogers et al., 1993; Sheehan & Burns, 2011). Because many of these narrators had been hospitalized more than once, the relative absence of expressed resistance to being hospitalized seems strange, particularly when earlier hospital experiences or their aftermath are often described as negative. For example, one individual characterized the time after being released from the hospital as, “My sense of self was questioned. I felt as if I lost my soul.” Another put it this way:When I got out of the private hospital, I felt like my soul had been ripped out of me. I felt like I had a gaping hole in the center of my body... I felt psychically raped, dazed, and confused.Given these... (shrink)

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. (shrink)