文章基本信息

标题：Determining What We Stand for Will Guide What We Do: Community Priorities, Ethical Research Paradigms, and Research With Vulnerable Populations
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作者：Leda M. Perez ; Henrie M. Treadwell
期刊名称：American journal of public health
印刷版ISSN：0090-0036
出版年度：2009
卷号：99
期号：2
页码：201-204
DOI：10.2105/AJPH.2008.125617
语种：English
出版社：American Public Health Association
摘要：Prisoners, ex-offenders, and the communities they belong to constitute a distinct and highly vulnerable population, and research must be sensitive to their priorities. In light of recent suggestions that scientific experimentation involving prisoners be reconsidered, community-based participatory research can be a valuable tool for determining the immediate concerns of prisoners, such as the receipt of high-quality and dignified health care inside and outside prisons. In building research agendas, more must be done to ensure the participation of communities affected by the resulting policies. GIVEN RECENT PROPOSALS to reexamine federal regulations pertaining to human experimentation in prisons,^{1 – 4} it is important that more be done to ensure that the viewpoints and life experiences of prisoners, ex-offenders, and their communities be considered. There has been recent debate about what constitutes ethical research in prisons and about the possible expansion of the scope of what is allowable. These questions arise because biomedical researchers are having difficulty in recruiting volunteers for clinical trials⁵ in the United States and because a number of private companies are increasingly seeking volunteers in other countries in which the costs of these experiments are less expensive, protocols are less complex, and compliance standards are less onerous.^{6 – 9} Some US researchers suggest that current regulations guiding prison research may be too strict and outdated,^{1 , 4} and arguments have been made in favor of reassessing the current norms.^{3 , 4} It has been noted, for example, that with the existence of institutional research boards, prisoners may actually benefit from this research if protocols are strengthened.^{1 , 3 , 4} At least one researcher has argued that prisoners have a constitutional right to choose to participate in a study, clinical or otherwise.² Other work has suggested that prisoners ought to have the same access to experimental drugs as people who are not in prison and that there are ways to erect safeguards to ensure that the abuses committed in the past are not repeated.^{2 – 4} We argue that until the question of adequate health care for prisoners is resolved, human experimentation should not be allowed. Why are so many people from low-income, minority communities incarcerated? Why do these populations appear to be a convenient and natural source for social research? And, given that prisons do exist, why is it that that a stronger focus is not placed on appropriate and dignified care for confined populations, such as those inside prisons as well as for ex-offenders and their communities? Why is not greater precedence being given to finding the best methods for ensuring one single standard for all? We know, for example, that prisoners tend to be sicker than the rest of the population, bearing significantly higher rates of infectious diseases such as hepatitis C, tuberculosis, and HIV as well as chronic conditions including asthma, hypertension, diabetes, and oral illnesses. High rates of mental illness are also prevalent,^{10 – 12} as well as the co-occurrence of substance abuse and mental illness. How these illnesses are treated in prison, and how much care is provided to ex-offenders after they leave prison, have direct implications for whether an ex-offender will reintegrate into society successfully.¹³ For research in prisons to be ethical, it must be interested in upholding prisoners’ constitutional right to appropriate quality care while in prison and ensuring a stronger and more effective safety net for them when they return home. It must focus first on ensuring that the health of all is protected. It must ask what safeguards are in place for those who have engaged in clinical trials while in prison should they later become ill or infected.