Research in Prisons: An Eye for Equity

• Equity
• prisoners
• research
• research ethics
• vulnerable populations

In the current issue of Ophthalmic Epidemiology, Tousignant1 documents a cluster of optic neuropathy in a prison population in Papua New Guinea. In these prisoners, the optic neuropathy was associated with folate deficiency, a condition that can readily be corrected with minor effort and negligible expense. The study serves to illustrate the vital role that epidemiologic research can play in documenting correctable health problems, especially in underserved or marginalized populations.

Tousignant and colleagues are to be commended for the special care that they devoted to assuring that the participating prisoners were not exploited in the process of the research – and for describing in detail the precautions that they took. Their study may serve to encourage other investigators to consider prison populations in research plans.

There are currently over 10 million prisoners worldwide;2 the health issues in prison populations are daunting. Around the world, prison populations are drawn from the most impoverished and marginalized sectors of their societies. Many incarcerated persons arrive at prison with histories of inadequate healthcare for acute and chronic health problems.3 Reviews of the published medical literature consistently reveal that the most common health problems among prisoners are mental health issues, substance abuse and communicable disease.4,5 HIV/AIDS, Hepatitis B and C, and drug-resistant tuberculosis are widespread concerns in prison populations,4 both because of high prevalence at the time of incarceration and due to the risk of transmission in prison. Additional health problems may arise in the course of incarceration, due to overcrowding, isolation, poor nutrition, inadequate exercise, and prison life itself. A recent review of non-communicable diseases in prison populations found broad deficiencies in diet and exercise, including some problems that could be readily addressed, such as energy intake that exceeded recommendations in some populations, and excesses in sodium and fat in the diets of others.6 The extent to which prison itself raises the risk of illness has only been investigated in relation to infectious diseases and is unknown in relation to most other disorders.4

Among the health problems in prisons, mental health issues stand out. Serious mental disorders including psychosis, depression, personality disorder, antisocial personality and substance abuse are far more common in prisoners than in the general population.2,7,8 Suicide is the leading cause of death in prisons, accounting for about half of all prison deaths.4 As many psychiatric institutions have reduced their bed numbers, especially in developed countries, prisons are now serving as modern asylums.3 As neuroscientist David Eagleman observed recently “prisons have become our de facto mental health care institutions.”9

In many settings, prison health problems are largely invisible. They remain hidden from the public eye, not only by the walls and barbed wire, but by legal and administrative barriers. In some instances, concerns are aggravated by the suspicion – and sometimes the evidence – that the governments that maintain prisons may not solicit, want or even tolerate additional scrutiny of what goes on behind prison walls. Concerns about the care and treatment of prisoners, such as the use of capital punishment for mentally ill prisoners in some countries, are widespread.4 In some cases attention may be unwelcome because of abuses inflicted by the governments themselves – torture10 or other violations of human rights – or, more broadly because actual conditions in prisons do not match what the public has been told, or the basic decency that the public expects. Governments and prison officials may also resist scrutiny of prison health conditions because they do not want the responsibility or expense of dealing with problems once they are documented.

Researchers who are considering studies of prison populations may also encounter the view that prisoners are not appropriate subjects for research, that they do not deserve public health attention or expenditures. It may be argued that prisoners are in prison, after all, to be punished, and that health problems in prisons are no more or less than part of the punishment. Prisons are intended to be unpleasant, and some may hold that prison unpleasantness includes health risks and problems. That is, prisoners may be seen as beyond the reach of claims of basic human rights. Non-political prisoners are generally assumed to have committed some wrong act, and may fail to elicit sympathy or compassion on the part of the general public.3

The research by Tousignant reminds us that there are two competing concerns when contemplating research on vulnerable populations: (1) what steps are appropriate to assure that the vulnerable population is not exploited in the service of the research goals, and (2) what steps are appropriate to assure that the vulnerable population is not excluded from participation in research that may be beneficial to members of the vulnerable population. The history of research on women, minorities, children, pregnant women, soldiers, the aged, and people with developmental or cognitive disabilities has led to the common conclusion that vulnerable populations may need safeguards, but are not well served by exclusion from participation in research. In essence, Tousignant’s research serves to illustrate that prisoners are vulnerable to neglect, an abuse that becomes less likely, even less possible, if it is documented through well-designed and well-conducted research.

Research on prison populations has been limited in recent years, due in large part to regulations and restrictions introduced in many countries in the 1970s to protect prisoners from exploitation. These restrictions were both needed and well intentioned, as they were based on the all-too-real abuses of the past. However, they also have had the unintended effect of depriving prisoners of access to the benefits of research.

Certainly, research on prison populations is special. In designing research that will involve prisoners as subjects, investigators must familiarize themselves with applicable regulations. For example, in the USA, institutional review boards reviewing and overseeing research that involves prisoners must include at least one prisoner or prisoner representative as a seated member of the board.11 The National Institutes of Health, World Health Organization and other bodies that oversee human subjects research now recognize the need for – and require attention to – equity in the selection of research subjects. Despite differences in emphasis, there is broad agreement between US and European oversight bodies on this principle.12 Equity is achieved only when the burdens of serving as research subjects and the benefits of potential improvements in health are distributed equitably across the population at risk. The most widely recognized benefit, brought into focus by the women’s and civil rights movements, is that participation in research contributes to improved awareness and understanding of health issues pertinent to the subpopulation from which the subjects are drawn. Participation in research may also provide access to investigational drugs which could not be obtained by other means.13,14

We look forward to more research that identifies, documents, quantifies, and analyzes health issues in prison populations, using research designs and human subject protection policies and procedures that assure that the subjects are not being exploited by the research itself, while assuring appropriate access to the benefits of research participation. Research is particularly needed on the epidemiology of acute and chronic – especially mental health – conditions in prison populations, and on the intersection of prisoner health and community health.3 The goal is to attain equitable participation in research for the world’s large prison population.