Ethical considerations for neuropsychologists as functional magnetic imagers

This discussion highlights ethical and practical issues potential neuropsychologist-imagers should consider in conducting functional magnetic resonance imaging (fMRI). While fMRI is not currently approved for clinical use, research is ongoing which has implications for clinical practice, from refining brain-behavior relationships, to assisting with diagnosis and treatment decisions. To protect the welfare of cognitively impaired populations requires special care with respect to MR risks and informed consent. Competent functional imaging requires an understanding of the strengths, limitations, and appropriate domain of applications of the measure.     

Respect for the developmentally disabled and forgoing life-sustaining treatment

A developmentally disabled person should be treated at all times as a unique individual and not as some anonymous "disabled person." The developmentally disabled should not be subjected to invasive medical treatment that is unduly burdensome or nonbeneficial, or be forced to endure a quality of life not meaningful to them as individuals. They have a right to refuse or accept treatment that a surrogate must exercise on behalf of each individual in a responsible and careful manner. Three cases and a preliminary approach to the ethical analysis of decisions to allow developmentally disabled persons to die by forgoing medical treatment are offered. The "best interests" of a developmentally disabled individual, properly understood, can serve as a useful and ethically defensible standard for determining the ethical propriety of surrogate decision making about forgoing life-sustaining medical treatment of the disabled.     

THINKING ABOUT THE GOOD: RECONFIGURING LIBERAL METAPHYSICS (OR NOT) FOR PEOPLE WITH COGNITIVE DISABILITIES

Abstract: Liberalism welcomes diversity in substantive ideas of the good but not in the process whereby these ideas are formed. Ideas of the good acquire weight on the presumption that each is a person's own, formed independently. But people differ in their capacities to conceptualize. Some, appropriately characterized as cerebral, are proficient in and profoundly involved with conceptualizing. Others, labeled cognitively disabled, range from individuals with mild limitations to those so unable to express themselves that we cannot be sure whether their behavior is mediated by concepts at all. Constricted cognitive capacities have been thought to prevent participation in the prescribed process for forming personalized ideas of the good. So liberal theory, when formulating principles and practices of justice, often disregards cognitively disabled peoples' perspectives. We put aside metaphysically driven notions about personhood and show how interpersonal processes of "prosthetic" thinking (different from surrogacy) can satisfy liberalism's standards, positioning cognitively disabled individuals as fully participating subjects of justice.     

THE PERSONAL IS PHILOSOPHICAL IS POLITICAL: A PHILOSOPHER AND MOTHER OF A COGNITIVELY DISABLED PERSON SENDS NOTES FROM THE BATTLEFIELD

Abstract: Having encountered landmines in offering a critique of philosophy based on my experience as the mother of a cognitively disabled daughter, I ask, "Should I continue?" I defend the idea that pursuing this project is of a piece with the invisible care labor that is done by people with disabilities and their families. The value of attempting to influence philosophical conceptions of cognitive disability by virtue of this experience is justified by an inextricable relationship between the personal, the political, and the philosophical. If one grants that the "special relationship" between mother and child requires moral recognition, then I need first to make vivid the case that this relationship in the case of a child who lacks some "normal capacities" is indistinguishable from any mother-child relationship. If this is so, then I believe I can make a case that has as its conclusion that the moral personhood of even the severely cognitively disabled must be granted. Moreover, such recognition, I argue, necessitates the recognition of others who bear no special relationships to the child.     

The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative

The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards (IRBs), to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation (REC) services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to highlight four contexts in which REC can be a valuable resource. REC assists: 1) investigators before and after the regulatory review; 2) investigators, IRBs, and other research administrators facing challenging and novel ethical issues; 3) IRBs and investigators with the increasing challenges of informed consent and risk/benefit analysis; and 4) in providing flexible and collaborative assistance to overcome study hurdles, mediate conflicts within a team, or directly engage with research participants. Institutions that have established, or plan to establish, REC services should work to raise the visibility of their service and engage in open communication with existing clinical ethics consult services as well as the IRB. While the IRB system remains the foundation for the ethical review of research, REC can be a valuable service for investigators, regulators, and research participants aligned with the goal of supporting ethical research.     

ESTABLISHING OPERATIONS AND REINFORCEMENT EFFECTS

Positive reinforcement procedures have had a major impact on educational programs for the developmentally disabled; nevertheless, variation in reinforcer effectiveness both within and across individuals is a common phenomenon. This study examined one class of variables—establishing operations—that might influence the effectiveness of reinforcers. Five developmentally disabled adult males participated. Responding on one of two motor tasks—switch closure or block placement—was assessed during baseline, satiation, and deprivation conditions with respect to three classes of consequences: small food items, music, and social praise. Deprivation and satiation conditions were constructed so as not to alter significantly the normal course of events in a subject's day. For example, food deprivation entailed scheduling sessions just prior to a subject's regular lunch, and social deprivation involved limiting a subject's access to social interaction for 15 minutes, during which time the subject had access to an assortment of other activities. Results showed that each stimulus class functioned as reinforcement with different degrees of effectiveness during satiation versus deprivation conditions. These results are discussed in light of previous research on enhancement of reinforcer efficacy as well as the assessment and identification of functional reinforcers, and implications are presented for future research and client habilitation.     

Toward a social ecology of the home-care household

I examined the relation between household parameters of size, composition, and temporal variability and indicators of care-giver and elder well-being. Two discrete groups of 20 care-giver-elder pairs were included in the study: (a) a group in which elders were moderately to severely cognitively impaired, but physically well, and (b) a group in which elders were moderately to severely physically disabled, but cognitively unimpaired. Care givers and elders were interviewed and assessed in their homes, and the care giver completed a 3-day log of home-care activities. Results indicated that care-giver and elder well-being are related to opposite values of the same household parameters in the two groups. The study demonstrates the utility of a social-ecological framework for research on home care, and suggests that the degree of fit of any particular household arrangement is relative to the competence-disability profile of the elder in care.     

Protecting and respecting the vulnerable: existing regulations or further protections?

Scholars and policymakers continue to struggle over the meaning of the word “vulnerable” in the context of research ethics. One major reason for the stymied discussions regarding vulnerable populations is that there is no clear distinction between accounts of research vulnerabilities that exist for certain populations and discussions of research vulnerabilities that require special regulations in the context of research ethics policies. I suggest an analytic process by which to ascertain whether particular vulnerable populations should be contenders for additional regulatory protections. I apply this process to two vulnerable populations: the cognitively vulnerable and the economically vulnerable. I conclude that a subset of the cognitively vulnerable require extra protections while the economically vulnerable should be protected by implementing existing regulations more appropriately and rigorously. Unless or until the informed consent process is more adequately implemented and the distributive justice requirement of the Belmont Report is emphasized and operationalized, the economically disadvantaged will remain particularly vulnerable to the harm of exploitation in research.     

Simple reaction time and depression in the elderly

Abstract

A measure of simple reaction time was administered to 111 elderly outpatients who were classified as depressed or nondepressed on two measures and as cognitively impaired or unimpaired based on the Mini-Mental State Exam (MMSE). Patients with cognitive impairment had slower reaction times, whether they were depressed or not. These results support previous findings of minimal influence of depression on cognitive measures in the elderly. They also point to the decreased efficiency of information processing in cognitively impaired individuals, with implications for their engaging in potentially hazardous activities.     

Conflict and Convergence: The Ethics Review of Action Research

The article is based on the author’s experience as an administrator of three primarily social science institutional review boards (IRBs) to which researchers presented research protocols that purported to be minimal risk studies of teacher practice where the “teacher–researcher” was the “research subject.” Recently, educational, social, and behavioral science researchers encounter many problems with regard to their methodologies and the oversight mandate of the IRBs. There is a divergence between the IRB’s role and assumed bio-clinical predisposition and the ability of behavioral and social science researchers to have their research methodologies and research understood and appreciated by IRB members. The article explores some of the dilemmas confronting IRB members and administrators in the review and administration of the action research protocols, particularly those that involve vulnerable populations and which, from the practitioner–researcher’s perspective, focus on the practitioner–researcher as the object of the research.     

The mark of adaptive memory in healthy and cognitively impaired older adults and elderly

The survival processing paradigm has recently drawn attention to the functional aspects of memory functioning. The survival effect, characterized by better memory performance when information is processed in a survival context, as compared with a variety of controls, is now well established in healthy populations. The main goal of this study was to test this paradigm in a group of cognitively impaired older adults and elderly; their data were compared to the data obtained in a group of healthy older adults and elderly. Seventeen cognitively impaired and 17 healthy participants performed a typical survival task using a blocked within‐subject design procedure and free recall as the memory test. The healthy older adults and elderly performed better on this memory task as well as on other tests included in a neuropsychological evaluation protocol. Importantly, both groups benefited from survival processing. These results provide further support for the power of survival processing, extending this phenomenon to cognitively impaired aging participants. The data also suggest that the survival effect is not simply a form of deep processing. Potential applied considerations are presented.     

Capacity to consent to research in schizophrenia: the expanding evidence base

Capacity to consent to research, fundamental to informed consent and thus vital to the ethical conduct of research, may be impaired among a variety of research populations. Until recently, relatively little empirical evidence has been available to inform discussion and policy-making regarding whose capacity should be assessed, what should be measured, and how it should be measured. Capacity to consent to research has emerged as a central topic in the field of "empirical ethics," an important area of biomedical research devoted to bringing evidence-based methods to the study of ethically salient issues in biomedical and biopsychosocial research. In this paper, empirical studies of capacity to consent to research are reviewed, with a particular focus on studies involving people with schizophrenia. These studies provide intriguing data regarding the nature, correlates, and modifiability of decisional abilities among potentially vulnerable research populations, including individuals with serious neuropsychiatric illnesses. Areas in need of further empirical ethics research are highlighted.     

The applied value of collaborative memory research in aging: Behavioral and neural considerations

Our aim in this paper is to bring attention to the applied value of collaborative memory research in aging. At this time, much collaborative memory research focuses on the negative effects of collaboration in younger adults, and is primarily basic in nature. Here, we highlight the positive effects of collaboration that have received less attention, with a particular emphasis on the applied value of these effects in older adults. We first review studies to show that recalling in a group improves later individual recall and reduces memory errors in older adults. We then outline a four-step approach towards bridging laboratory and applied collaborative memory research, which involves: (1) complementing traditional paradigms with more ecologically valid paradigms, (2) evaluating these paradigms in applied settings, (3) adapting these paradigms for use with cognitively intact and cognitively impaired populations, and (4) modifying these paradigms to examine the neural systems that operate during collaborative recall.     

Substance Abuse in Persons With Disabilities: Treatment Considerations

In this article the authors examine the issues and needs of individuals who are physically disabled and have substance abuse problems. Reasons for the high rate of substance abuse among individuals who are physically disabled are explored. Treatment considerations for such individuals are addressed and include individual, family, and educational counseling. Prevention issues are examined, and the importance of the Americans with Disabilities Act (ADA, 1990) is assessed.     

Coping behavior: Implications for disabled infants and toddlers

This article discusses the coping process and examines issues concerning the influence of a handicapping condition on the development of coping competence in young children. A preliminary study is reported that investigated the differences between the coping behavior of 25 developmentally disabled and 25 nondisabled children who were 4 to 34 months of age. The Early Coping Inventory was used to assess three categories of behavior related to adaptive coping efforts (sensorimotor organization, reactive behavior, and self-initiated behavior). Results indicated that the nondisabled children, as a group, demonstrated more effective coping-related behavior than did their disabled peers. The disabled children were situationally effective, in that behavior used effectively in one type of situation was not generalized to other types of situations. Their coping behavior tended to be erratic, inflexible, or limited in the range of available management strategies. The greatest discrepancy between the two groups was in their self-initiated behavior. The findings suggest the need for intervention services to address the enhancement of coping behavior of infants and toddlers with disabilities.     

Cognitively impaired older adults exhibit comparable difficulties on naturalistic and laboratory prospective memory tasks

Prospective memory, or remembering future intentions, is critical for independent living for all ages, but especially older adults. Previous laboratory research has found that cognitively impaired older adults may have particular difficulties with prospective memory, but previous studies have not examined whether these difficulties occur in everyday life. In normal ageing, a dissociation between settings has been observed, with older adults selectively impaired in laboratory (but not naturalistic) contexts. Consequently, in the present study 15 cognitively impaired older adults were compared to demographically matched controls on laboratory and naturalistic measures of prospective memory. The results indicated that the cognitively impaired group performed more poorly on both measures, with the magnitude of the deficit comparable across setting. These results indicate that for older adults who present with cognitive impairment prospective memory deficits observed in laboratory settings may be a valid indicator of difficulties experienced executing delayed intentions in everyday life. Copyright © 2008 John Wiley & Sons, Ltd.     

Career development of special populations: A framework for research

In view of the recent interest in the career behaviors of diverse groups of individuals, this article presents a model for conducting research on the career development of special populations. Available research paradigms are reviewed in terms of their potential impact on such efforts. An alternative framework, designed to make maximum use of available data sources while minimizing potential theoretical bias, is offered. An illustration of research conducted within the recommended framework is presented in which the impact of a variety of career-related variables on the attitudinal and cognitive aspects of vocational maturity is examined from the perspective of two special population groups, disabled and disadvantaged college students. Drawing upon previous research findings, variables under consideration included level of scholastic achievement and endorsement of rational, intuitive, and dependent decision-making styles. Also included were two population-specific variables related to the characteristics of membership in each of the two special groups. The regression analyses conducted to explore the relationships between vocational maturity and these predictor variables indicate, in general, that variance in the attitudinal and cognitive factors of vocational maturity can be at least partially explained by the variables considered. However, the relative contributions of the predictors and the resulting proportions of variance explained differs according to which population and which criterion factor is under examination. These findings are compared with those emerging from previous research, and implications for future efforts are discussed.     

Fathers as Intervention Agents for Their Children with Developmental Disabilities

ABSTRACT

Parent training aimed at aiding children to overcome social and behavioral problems is an area that has continued to gain attention and support. Very little of the current research has been with developmentally disabled children, the focus of this study. Additionally, for most parent training programs, “parents” actually refers to mothers. In this study three fathers and their developmentally disabled children, who ranged in age from 2 years 10 months to 4 years 5 months, were studied. A multiple baseline across fathers' behaviors was utilized for participants to evaluate effects of parent training on fathers' target behaviors. Child compliance and inappropriate behaviors were also addressed. Parent training resulted in desirable changes on a range of target behaviors. The implications of these findings are discussed.     

Dealing with the long-term social implications of research

Biomedical and behavioral research may affect strongly held social values and thereby create significant controversy over whether such research should be permitted in the first place. Institutional review boards (IRBs) responsible for protecting the rights and welfare of participants in research are sometimes faced with review of protocols that have significant implications for social policy and the potential for negative social consequences. Although IRB members often raise concerns about potential long-term social implications in protocol review, federal regulations strongly discourage IRBs from considering them in their decisions. Yet IRBs often do consider the social implications of research protocols and sometimes create significant delays in initiating or even prevent such research. The social implications of research are important topics for public scrutiny and professional discussion. This article examines the reasons that the federal regulations preclude IRBs from assessing the social risks of research, and examines alternative approaches that have been used with varying success by national advisory groups to provide such guidance. The article concludes with recommendations for characteristics of a national advisory group that could successfully fulfill this need, including sustainability, independence, diverse and relevant expertise, and public transparency.     

Research ethics committees: a regional approach

Guidelines for Institutional Review Boards (IRBs) or research ethics committees exist at national and international levels. These guidelines are based on ethical principles and establish an internationally acceptable standard for the review and conduct of medical research. Having attained a multinational consensus about what these fundamental guidelines should be, IRBs are left to interpret the guidelines and devise their own means of implementing them. Individual and community values bear on the interpretation of the guidelines so different IRBs attain different levels of effectiveness. In the Caribbean and Pan American regions there are few IRBs. Obstacles to the establishment and function of IRBs are exacerbated in developing regions like these by differences in language, literacy, and local value systems; education, administrative expertise, facilities, and access to information are also limited. A regional IRB network might facilitate more uniform ethical review in developing countries, and simplify IRB procedures. This revised version was published online in August 2006 with corrections to the Cover Date.