Obtaining Informed Consent for Research: A Model for Use with Participants Who Are Mentally Ill

2002 ◽  
Vol 30 (3) ◽  
pp. 367-374 ◽  
Author(s):  
Norman G. Poythress
Keyword(s):  
Informed Consent ◽  
Mentally Ill ◽  
Research Participation ◽  
Placebo Treatment ◽  
Thought Disorder ◽  
Formal Thought Disorder ◽  
People With Mental Illness ◽  
Institutional Review ◽  
The One ◽  
Ongoing Concern

An issue of ongoing concern to clinical investigators, medical ethicists, and institutional review board (IRB) members is the problem of obtaining informed consent in research that involves people with mental illness as research participants. Although the presence of a mental disorder per se does not render a person incapable of giving informed consent, some individuals afflicted with significant cognitive impairment, formal thought disorder, substantial anxiety or depression, or a variety of other symptoms may be impaired in their capacity to comprehend consent disclosures and therefore to exercise consent to research participation in a competent manner.The stakes surrounding this informed consent issue are significant. On the one hand, the inclusion in research of participants who are not capable of giving informed consent may result in their exposure to unwarranted risks and significant harm. These concerns may be exacerbated in certain clinical trials in which patients are required to discontinue their medications during “washout periods” at the onset of a study, or are randomly assigned to a placebo treatment and remain off medication for (potentially) extended periods.

Familial Relationships of Allusive Thinking in University Students and Their Parents

1968 ◽  
Vol 114 (514) ◽  
pp. 1079-1087 ◽  
Author(s):  
N. McConaghy ◽  
M. Clancy
Keyword(s):  
University Students ◽  
Mentally Ill ◽  
Psychiatric Patients ◽  
Cultural Background ◽  
Thought Disorder ◽  
Control Group ◽  
Conceptual Level ◽  
Formal Thought Disorder ◽  
Object Sorting ◽  
Sorting Test

Rapaport (1945) was the first worker to advance evidence that at least two types of formal thought disorder contributed to the disturbance of thinking found in schizophrenia; and furthermore that neither of these types of thinking was specific to schizophrenia. Rapaport administered the Bolles Goldstein Object Sorting Test to 217 psychiatric patients and to a control group of 54 patrolmen. He found that schizophrenics showed a tendency to function more at a concrete level and less at an abstract conceptual level, as described first by Vigotsky (1934). This tendency was also shown by depressives and by persons who were not mentally ill but had a poor cultural background.

Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians

2019 ◽  
pp. 27-38
Author(s):  
Britteny M. Howell ◽  
Karrie A. Shogren
Keyword(s):  
Intellectual Disability ◽  
Informed Consent ◽  
Research Participation ◽  
Research Literature ◽  
Self Determination ◽  
Institutional Review Board ◽  
Research Institutions ◽  
Ethical Research ◽  
Institutional Review ◽  
Participation In Research

Increasing participation of people with intellectual disability (ID) is necessary for inclusive, ethical research that reduces persistent disparities in representation. However, many adults with ID have guardians, who must consent to research involvement. Researchers have found that guardians are less likely to provide consent than the person with ID, often resulting in lower participation. Institutional Review Board (IRB) members also have been found to hold very cautious views regarding research participation compared to the views of people with ID or their guardians. This chapter reviews issues that emerge because of differing views of research participation held by IRB members, guardians, and people with ID that may unnecessarily limit the participation of people with ID in research. The research literature on these barriers is summarized along with the authors’ own experiences with alternative participatory strategies that have the potential to increase both self-determination and participation in research for people with ID.

scholarly journals Neurobiological substrates of the positive formal thought disorder in schizophrenia revealed by seed connectome-based predictive modeling

2021 ◽  
Vol 30 ◽  
pp. 102666
Author(s):  
Ji Chen ◽  
Tobias Wensing ◽  
Felix Hoffstaedter ◽  
Edna C. Cieslik ◽  
Veronika I. Müller ◽  
...  
Keyword(s):  
Predictive Modeling ◽  
Thought Disorder ◽  
Formal Thought Disorder ◽  
Neurobiological Substrates

scholarly journals Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

2021 ◽  
Vol 15 (1) ◽  
Author(s):  
S. Mezinska ◽  
L. Gallagher ◽  
M. Verbrugge ◽  
E.M. Bunnik
Keyword(s):  
Informed Consent ◽  
Neurodevelopmental Disorders ◽  
Cognitive Abilities ◽  
Social Impact ◽  
Mental Health Problems ◽  
Ethical Issues ◽  
Family Members ◽  
Genetic Diagnosis ◽  
Research Participation ◽  
Genomic Research

Abstract Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research participants, and communication of research results. Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper.

Informed Consent: Ezenwa–Ohaeto between Past and Future Uses of Pidgin

Matatu ◽  
2006 ◽  
Vol 33 (1) ◽  
pp. 115-134 ◽  
Author(s):  
Chantal Zabus
Keyword(s):  
Informed Consent ◽  
First Language ◽  
West African ◽  
The Other ◽  
Wole Soyinka ◽  
The West ◽  
West African Coast ◽  
African Coast ◽  
The 1950S ◽  
The One

The essay shows how Ezenwa–Ohaeto's poetry in pidgin, particularly in his collection (1988), emblematizes a linguistic interface between, on the one hand, the pseudo-pidgin of Onitsha Market pamphleteers of the 1950s and 1960s (including in its gendered guise as in Cyprian Ekwensi) and, on the other, its quasicreolized form in contemporary news and television and radio dramas as well as a potential first language. While locating Nigerian Pidgin or EnPi in the wider context of the emergence of pidgins on the West African Coast, the essay also draws on examples from Joyce Cary, Frank Aig–Imoukhuede, Ogali A. Ogali, Ola Rotimi, Wole Soyinka, and Tunde Fatunde among others. It is not by default but out of choice and with their 'informed consent' that EnPi writers such as Ezenwa–Ohaeto contributed to the unfinished plot of the pidgin–creole continuum.

Commentary 1: Research with Persons Under Involuntary Commitment—Ethical Issues Surrounding Competence and Voluntariness

2019 ◽  
Vol 14 (5) ◽  
pp. 475-478
Author(s):  
Matthé Scholten ◽  
Jochen Vollmann
Keyword(s):  
Informed Consent ◽  
Ethical Issues ◽  
Research Participation ◽  
Research Participant ◽  
Involuntary Commitment ◽  
Proxy Consent ◽  
Undue Influence ◽  
Research Participants ◽  
Manic Symptoms ◽  
Prospective Research

In this case commentary, we analyze ethical concerns that were raised in response to an interview with a woman with bipolar disorder who was under involuntary commitment. We focus on competence and voluntariness as two prerequisites for valid informed consent. We recommend that judgments of competence be based on whether prospective research participants sufficiently possess certain decision-making abilities. Based on this functional approach, we argue that manic symptoms need not undermine competence and that, even if we were to assume that the research participant became incompetent during the interview, this would not invalidate her consent retroactively. It would, however, compromise her ability to revoke her consent. We furthermore show that obtaining additional proxy consent for research participation may compromise the autonomy of service users who are competent to consent. Then we turn to the issue of voluntariness. Arguing that neither the great strength nor the external etiology of a desire compromises voluntariness, we propose that the voluntariness of a decision instead depends on whether the decision-maker endorses it on reflection. The researchers disclosed that prospective research participants’ decision about study participation would have no influence on the duration of the commitment or the quality of care. We contend that because of this neither coercion nor undue influence was exerted in the informed consent process. Nevertheless, there is an increased likelihood of perceived coercion and undue influence under conditions of involuntary commitment, and we close by suggesting some safeguards to prevent this.

scholarly journals Management aspects of care for the homeless mentally ill

1996 ◽  
Vol 2 (4) ◽  
pp. 158-165 ◽  
Author(s):  
P. Timms
Keyword(s):  
Mental Illness ◽  
Inner City ◽  
Severe Mental Illness ◽  
Social Service ◽  
Mentally Ill ◽  
Economically Disadvantaged ◽  
High Unemployment ◽  
People With Mental Illness ◽  
Homeless Mentally Ill ◽  
The Continuum

People with mental illness have always been marginalised and economically disadvantaged. Warner (1987) has shown that this is particularly true in times of high unemployment. Poor inner-city areas have excessive rates of severe mental illness, usually without the health, housing and social service provisions necessary to deal with them (Faris & Dunham, 1959). The majority of those who suffer major mental illness live in impoverished circumstances somewhere along the continuum of poverty. Homelessness, however defined, is the extreme and most marginalised end of this continuum, and it is here that we find disproportionate numbers of the mentally ill.

Implementation of Community Consultation for Waiver of Informed Consent in Emergency Research: One Institutional Review Board's Experience

2004 ◽  
Vol 52 (2) ◽  
pp. 113-116 ◽  
Author(s):  
Emily S. Dix ◽  
Domenic Esposito ◽  
Frances Spinosa ◽  
Nancy Olson ◽  
Stanley Chapman
Keyword(s):  
Informed Consent ◽  
Community Consultation ◽  
Emergency Research ◽  
Institutional Review

Formal thought disorder in first-episode psychosis

2016 ◽  
Vol 70 ◽  
pp. 209-215 ◽  
Author(s):  
Ahmet Ayer ◽  
Berna Yalınçetin ◽  
Esra Aydınlı ◽  
Şilay Sevilmiş ◽  
Halis Ulaş ◽  
...  
Keyword(s):  
First Episode Psychosis ◽  
Thought Disorder ◽  
First Episode ◽  
Formal Thought Disorder ◽  
Episode Psychosis

scholarly journals Public attitudes towards people with mental illness in England and Scotland, 1994–2003

2009 ◽  
Vol 194 (3) ◽  
pp. 278-284 ◽  
Author(s):  
Nisha Mehta ◽  
Aliya Kassam ◽  
Morven Leese ◽  
Georgia Butler ◽  
Graham Thornicroft
Keyword(s):  
Mental Illness ◽  
Mentally Ill ◽  
Public Attitudes ◽  
Health Attitudes ◽  
Significant Deterioration ◽  
Community Attitudes ◽  
Positive Effects ◽  
Department Of Health ◽  
People With Mental Illness ◽  
Quota Sampling

BackgroundUnderstanding trends in public attitudes towards people with mental illness informs the assessment of ongoing severity of stigma and evaluation of anti-stigma campaigns.AimsTo analyse trends in public attitudes towards people with mental illness in England and Scotland using Department of Health Attitudes to Mental Illness Surveys, 1994–2003.MethodWe analysed trends in attitudes for 2000 respondents in each survey year (6000 respondents in 1996 and 1997) using quota sampling methods and the adapted Community Attitudes Toward the Mentally Ill scale.ResultsComparing 2000 and 2003, there was significant deterioration for 17/25 items in England and for 4/25 items in Scotland. Neither country showed significant improvements in items between 2000 and 2003.ConclusionsPublic attitudes towards people with mental illness in England and Scotland became less positive during 1994–2003, especially in 2000–2003, and to a greater extent in England. The results are consistent with early positive effects for the ‘see me’ anti-stigma campaign in Scotland.

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