Ethical Considerations for Research Involving Prisoners (2007) / Chapter Skim
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2 Today's Prisoners: Changing Demographics, Health Issues, and the Current Research Environment
2 Today's Prisoners: Changing Demographics, Health Issues, and the Current Research Environment
Pages 29-72
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Through class actions over the inadequacies of state prison health-care systems, the most serious problems were largely addressed and health-care delivery systems were put in place (Metzner, 2002; Sturm, 1993)
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. The committee's review of current research indicated that the majority of research involving prisoners is happening outside the purview of Subpart C, and many prisoner studies are being conducted without review or approval by an institutional review board (IRB)
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. Today, two-thirds of inmates are housed in federal and state prisons, and the other third are in local jails.
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. The prison growth during the 1990s dwarfed the growth in any previous decade; it exceeded the prison growth of the 1980s by 61 percent and is nearly 30 times the average prison population growth of any decade before the 1970s (JPI, 2002)
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BJS reports that, in 1997, 21 percent of state prisoners and more than 60 percent of federal prisoners were incarcerated for drug offenses (BJS, 1999c)
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, for-profit prisons, and other changes in the legal system have contributed to the spectacular rise of the general prison population. The Sentencing Project (TSP)
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. By the end of 2004, 104,848 women and 1,391,781 men were in state or federal prisons.
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Often, their property offenses are economically driven, motivated by poverty and by the abuse of alcohol and other drugs." Women prisoners in general have poorer health than men, with higher rates of mental illness (BJS, 1999a) and HIV infection (BJS, 1999b)
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. "Women have more severe substance abuse histories by the time they come to the attention of the criminal justice sys tem," said Nena P
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. Poor reading and communication skills pose a challenge to informed consent, which is often handled through written documents, and points to the importance of ensuring that informed consent procedures are monitored to determine that prisoners truly understand what they are consenting to.
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Forty-one percent of inmates in the nation's state and federal prisons and local jails and 31 percent of probationers had not completed high school or its equivalent (Table 2-7)
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College, vocational, and high school courses are most common in federal prisons and least common in private prisons. For example, college courses are offered by 80 percent of federal prisons and 27 percent of private prisons.
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TABLE 2-8 Participation in Educational Programs Since Most Recent Incarceration or Sentence, for State and Federal Prison Inmates, 1997 and 1991, for Local Jail Inmates, 1996, and for Probationers, 1995 State Federal Local Jail Inmates Probationers Variable 1991 1997 1991 1997 1996 1995 Educational programs Total (%) 56.6 51.9 67.0 56.4 14.1 22.9 Basic 5.3 3.1 10.4 1.9 0.8 0.4 GED/high school 27.3 23.4 27.3 23.0 8.6 7.8 College courses 13.9 9.9 19.9 12.9 1.0 6.1 ESOL NA 1.2 NA 5.7 NA NA Vocational 31.2 32.2 29.4 31.0 4.8 7.0 Other 2.6 2.6 8.4 5.6 2.1 3.4 Number of inmates 709,042 1,046,136 53,753 87,624 501,159 2,055,942 NOTE: Detail may not add to total because of rounding or inmates' participation in more than one program.
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Health Status of Inmates A highly disproportionate number of inmates suffer from infectious diseases, chronic diseases, and mental illness compared with the rest of the nation's population. According to a 3-year study requested by Congress and delivered in May 2002 by the National Commission on Correctional Health Care (The Health Status of Soon-to-Be-Released Inmates)
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. HIV/AIDS At year end 2003, there were 23,659 inmates in state and federal prisons known to be infected with HIV (BJS, 2005d)
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. In 1998, more than 179,000 offenders in state prisons, 7,900 in federal prisons, 96,700 in local jails, and almost 548,000 probationers were identified as mentally ill (Table 2-9)
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Mentally ill prisoners tend to serve longer sentences and experience more disciplinary problems while in prison. In addition, approximately 75 percent of people with serious mental illnesses in the criminal justice system have a co-occurring substance abuse disorder (New Freedom Commission on Mental Health [NFCMH]
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They refuse to obey orders or lash out without apparent prov TABLE 2-11 Percent of Mentally Ill Receiving Mental Health Services While Incarcerated, 1998 Variable State Prison Federal Prison Local Jail Gender (5) Male 59.9 57.4 38.4 Female 67.3 76.5 56.2 Race/ethnicity (%)
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In the United States, there are three times more mentally ill people in prisons than in mental health hospitals, and prisoners have rates of mental illness that are two to four times greater than the rates of members of the general public. Substance abuse Drug and alcohol use and abuse play major roles in the lives of prisoners.
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. In 2000, there were 34,355 assaults by state and federal prisoners against other inmates, and 51 prisoners died as a result of those violent actions (BJS, 2003d)
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In October 1999, according to a GAO (1999) report, about 30 percent of female inmates and 24 percent of male inmates in federal prisons were assigned to facilities more than 500 miles from their release residences.
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About 10 percent of state and federal prisons and 50 percent of jails do not adhere to CDC standards for screening and treating latent TB infection and active disease. Most prisons and jails fail to conform to nationally accepted health-care guidelines for mental health screening and treatment.
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. Since then, state regulators have faulted Prison Health Services in several deaths (Von Zielbauer, 2005d)
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Despite a tarnished record, Prison Health has sold its promise of lower costs and better care and become the biggest for-profit company providing medical care in jails and prisons. It has amassed 86 contracts in 28 states, and now cares for 237,000 inmates, or about one in every 10 people behind bars (Von Zielbauer, 2005a)
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, including mental health and substance abuse problems. In 1992, prisoners who were expecting to be released to the community without supervision by 1999 had the following mental health and substance abuse problems: 14 percent were mentally ill, 25 percent were alcohol dependent, 42 percent reported the use of alcohol at the time of the offense, 59 percent reported drug use in the month before the offense and 45 percent at the time of the offense, 25 percent reported intravenous drug use in the past, and 12 percent were homeless when they were arrested (BJS, 2001a)
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Uneducated and financially desperate prisoners "volunteered" for medical experiments that ranged from tropical and sexually transmitted diseases to polio, cancer, and chemical warfare." By the 1960s, new drug-testing regulations mandated by the Food and Drug Administration permitted increased human experimentation as large pharmaceutical companies sought stronger relationships with penal institutions. This article references earlier work by Jessica Mitford (1974)
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, and the epidemiology of AIDS made discussions of research in prisons fraught with emotion. Implications of Demographics for the Ethical Conduct of Research The limitations on personal freedoms and inadequacies in health care carry important challenges for the ethical conduct of research involving prisoners.
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. When correctional health care services are inadequate, voluntary informed consent becomes a greater challenge (Anno and Dubler, 2001)
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.11 The right to refuse is based on the concept of informed consent: A prisoner's right to refuse treatment is useless without knowledge of the proposed treatment. Prisoners have a right to such information as is rea sonably necessary to make an informed decision to accept or reject pro 4Spicerv.
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. • The aging of the prisoner population, the high number of prisoners with mental illness, and the poor reading and communication skills among prisoners means that there are now increased concerns about prisoners' capability to give informed consent, calling for a greater focus than before on the informed consent process and validation of prisoner consent to test their comprehension of research disclosures (see Chapter 6)
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Department of Health and Human Services (DHHS) regulations for the protection of prisoners involved in research, it faced a dearth of information as to the recent and current landscape of research involving prisoners as participants.
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• Many research activities (mainly records reviews and program evaluations) are initiated by in-house staff, according to the six state DOCs that responded to the more in-depth interviews.
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Published Literature: A Review of Selected Prisoner Studies19,20 Key findings from the literature survey include the following: Locus of research activity Just over half of the prisoner studies were conducted in higher-security confinement settings, including jails and prisons (see Figure 2-2)
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. Not greater than minimal risk included any study based on review of administrative records; any program evaluation study; any nontherapeutic social/behavioral study that involved either no manipulation (e.g., innocuous questionnaires and surveys)
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. An alternative classification of study content reveals that health status questions (43 percent)
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.21 A review of 10 years of correctional and scientific literature on HIV/ AIDS studies involving prisoners (Farley, unpublished, 2005) yielded similar findings.
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Recommendation 2.1: Maintain a public database of all research in volving prisoners. The Department of Health and Human Services, in cooperation with the Department of Justice, should systematically and comprehensively document all human subjects research with prisoners.22 The establishment of a national registry of research involving prisoners should include data, such as who is conducting research, with what support, what kind of research, on what populations, and the nature and extent of ethical oversight provided.
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gov does not include social/behavioral research, but it could be a starting point and leveraging mechanism to make Recommendation 2.1 feasible and not cost prohibitive. Summary of Findings on Current Research Environment Findings from the surveys of DOC personnel and the literature review shed light on the possible impact of the national commission's Report and Recommendations -- Research Involving Prisoners (NCPHSBBR, 1976)
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Also, prison research committees, which may serve some type of proxy IRB role, only infrequently include prisoners or prisoner representatives among their membership. • Biomedical research involving prisoners, particularly that of a nontherapeutic nature, is rare, perhaps as a consequence of the national commission's 1976 report.
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2004a. Hepatitis Testing and Treatment in State Prisons.
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Prisons and Offenders with Mental Illness. [Online]
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. NCPHSBBR (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research)
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U.S. seizes state prison health care: Judge sites preventable death of inmates, depravity of system.
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An introduction to the constitutional law of prison medical care. Journal of Prison Health 1(1)
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