ReviewsPsychiatric research ethics: an overview of evolving guidelines and current ethical dilemmas in the study of mental illness
Introduction
The ethical foundation of psychiatric research has been seriously challenged as our country has focused its attention on the evolving standards of ethical conduct in human investigation Appelbaum 1997, Dresser 1996, National Bioethics Advisory Commission 1998, December, Shamoo 1997. This focus is evidenced by the extensive inquiry (1994–1995) into the Human Radiation Experiments in which thousands of individuals were exposed to experimental hazards without their awareness or consent (The President’s Advisory Committee 1996). It is also reflected in President Clinton’s formal apology in 1997 to survivors of the Tuskegee Study in which 200 black men diagnosed with syphilis were intentionally led to believe that they were receiving treatment but were not (Kampmeier 1974). These experiments serve as just two of many important examples of disquieting research practices from throughout biomedical science in recent decades Beecher 1966, Katz 1972, Rothman 1987. They also illustrate how there has been a substantive change in what is understood by our society to be ethically acceptable for the sake of advancing science.
Seeking to clarify this basic moral and societal question has been a key aim of the President’s National Bioethics Advisory Commission, the National Institutes of Health, and research ethicists nationally over the past few years Bell et al 1998, Brody 1998, Hoagwood et al 1996, National Bioethics Advisory Commission 1998, December, Roberts 1997, December. During this time, psychiatric research has become a topic of immense controversy despite the fact that the most disturbing human studies of the past century have not been performed by psychiatrists, although some certainly have involved people with mental illness Beecher 1966, Katz 1972, Roberts 1998. Ironically, this also occurs at a point in history when neuropsychiatric investigation holds great promise for improving our knowledge of mental illness and its treatment Hyman 1999, Lieberman 1996, Pincus et al 1998, Roberts 1997, December. Therefore, with this controversy comes an invitation to construct a more refined and perhaps more enduring understanding of the ethical basis of psychiatric research. The aim of this paper is to help advance this understanding in two ways: 1) by tracing the evolution of the emerging ethic for biomedical experimentation, including a discussion of the recent recommendations of the National Bioethics Advisory Commission; and 2) by reviewing data and concepts related to compelling ethical questions now faced in the study of mental disorders.
Section snippets
Evolving ethics guidelines for biomedical experimentation
Naiveté regarding the ethics of human experimentation was lost with recognition of the cruel and widespread misuse of human beings in the guise of biomedical science during World War II Angell 1990, Brody 1998, Katz 1972, Menkin 1968, Pincus et al 1998. As part of the judgement against 23 Nazi physicians and officials who conducted “studies” of prisoners (including Jews, Czechs, Poles, twins, homosexuals, individuals with mental illness, individuals with mental retardation, and others) in
The national bioethics advisory commission report
The NBAC issued its revised, extensive draft report on “Research Involving Persons with Mental Disorders that May Affect Decisionmaking Capacity” in November 1998 after roughly one year of review (National Bioethics Advisory Commission 1998). The Commission found no evidence of widespread exploitative research conduct involving people with mental illness; rather, the Commission stated, it was the perception of a “gap” in the regulations related to research with a vulnerable group that was
Current ethical questions in psychiatric research: empirical review
Three ethical questions are especially prominent within the field of psychiatric research at this time: 1) Are individuals with mental illness able to give informed consent? 2) How well do ethical safeguards work in protecting human participants of research? and 3) What do we understand about the competing scientific and ethical imperatives in current experimental practices? As discussed in this section, insights into these questions may be garnered through review of some of the valuable
Conclusion
Psychiatric researchers increasingly will be called upon to justify their scientific approaches and to enhance the ethics safeguards employed in their experiments with potentially vulnerable human participants. Greater sophistication is needed with respect to the distinct ethical issues in psychiatric research to develop approaches that foster fruitful investigation while adequately protecting human participants, not only in theory, but in practice. Advanced empirical work is necessary so that
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Do human subject safeguards matter to potential participants in psychiatric genetic research?
2019, Journal of Psychiatric ResearchCitation Excerpt :The recommendations included required independent assessments of participants’ decision-making capacity for studies presenting greater than minimal risk and procedures for involving alternative (surrogate) decision makers when participants were deemed to lack capacity. However, such calls for more stringent regulations for studies involving people with psychiatric disorders met with strong criticism from the psychiatric research community (Carpenter and Conley, 1999; Charney, 1999; Roberts and Roberts, 1999) and other important stakeholders, including family members and advocates of people with mental illness (Public comments, 1998). Such criticism was based upon ethically principled arguments (justice and fairness in the burdens and benefits of research; autonomy of individual participants), as well as empirical evidence on research-related decision-making abilities of individuals with mental disorders.
Psychiatry: Informed Consent and Care
2015, International Encyclopedia of the Social & Behavioral Sciences: Second Edition