Regulatory and ethical principles in research involving children and individuals with developmental disabilities

Children and individuals with developmental disabilities (DD) compared to typical participants are disadvantaged not only by virtue of being vulnerable to risks inherent in research participation but also by the higher likelihood of exclusion from research altogether. Current regulatory and ethical guidelines although necessary for their protection do not sufficiently ensure fair distributive justice. Yet, in view of disproportionately higher burdens of co-occurring physical and mental disorders in individuals with DD, they are better positioned to benefit from research by equitable participation. Greater elucidation of this ethical dilemma is called for by researchers, institutional review boards, and funding agencies to urgently redress the imbalance. This article discusses many of the regulatory principles to ensure better research participation of children and individuals with DD: human rights, validity, distributive justice, beneficence/nonmaleficence, and autonomy.     

SIDDS: Simulations in developmental disabilities

SIDDS, or simulations in developmental disabilities, is a computer system that provides students with the opportunity to acquire and practice skills in behavioral psychology. During the simulation, the student assumes the role of a psychologist whose professional duties involve the assessment and treatment of the severe problem behavior displayed by a child with a developmental handicap. Following an introduction to the use of the program, SIDDS guides the student/clinician through a series of steps involved in reducing a behavior problem. With the goal of eliminating the client’s behavior problem, the student/clinician proceeds through referral, problem identification, assessment, functional hypothesis, and treatment stages. This article describes the content and structure of SIDDS and provides a glimpse of what future developments of this system will entail.     

Some ethical dilemmas in counselling and counselling research

This paper raises a number of dilemmas in relation to the ethical practice of counselling, counsellor training and research and evaluation of counselling which reflect the author's increasing concerns about therapeutic ethics. A number of relevant issues are explored to develop awareness and understanding of ethical matters, though this is in the spirit of exploration and inquiry rather than having definitive answers to offer. These issues include: use of training videos of therapists with real clients; informed consent; how research and evaluation changes the therapeutic process; how sensitive and ongoing consent for counselling and counselling research could be best obtained; publication of research in ways that respect the research participant; and the value and implications of the new British Association for Counselling and Psychotherapy ethical framework. Finally, the concept of 'ethical mindfulness' is considered as a creative, if demanding, response to a concern to be ethical in research and practice.     

Tackling ethical dilemmas in personality assessment.

This is a useful and thought-provoking special series about ethical issues in personality assessment. All of the articles in this special series are discussed. Some common themes and guidelines emerge from the articles. Given the complexity of many ethical dilemmas, it is important to follow a decision-making model. Several models are presented in this series. One must learn the rules and common ethical dilemmas that occur in the setting one is in. Current ethical problems should be used to prevent similar problems in the future. It is important to consult with other professionals before acting. Finally, work should be done to increase exposure of psychologists to common ethical problems in the field of personality assessment.     

Brain plasticity,learning, and developmental disabilities

This is a time of significant gains in methodological development for examining the developing human brain. New efforts are underway to unify the understanding of the development of brain anatomy with physiological, cellular and molecular processes that influence behavioral development. This special issue provides animal models of behavior and brain development, applications of noninvasive imaging and genetic methods to human brain development and behavior, and select reviews of how these models and methods have been applied to the examination of developmental disabilities. This issue reflects a sampling of current approaches to the study of brain plasticity, development and learning in typically and atypically developing humans and animals.     

Some ethical dilemmas in sensitivity training, encounter groups and related activities

Some ethical dilemmas in connection with sensitivity training, encounter groups and related activities are discussed. We distinguished between pre-group, in-group and post-group dilemmas. Pre-group dilemmas consisted of competence of leader, screening of participants, contract, voluntary participation, conflicting roles, organization of group work and conducting of research. In-group dilemmas were optimum level of awareness, leadership style and personality, image of man, issue of "casualties", confidentiality and freedom to make errors. Post-group dilemmas included "re-entry" difficulties, repression of changing individuals and follow-up procedures. Conclusions were as follows: ( a ) There exist indeed a series of ethical dilemmas in conducting growth groups. ( b ) The good group leader must learn to live with this seemingly chronic ethical dissonance. ( c ) The one most significant ethical guideline is to establish the optimum level of awareness in the group. ( d ) There is a pressing need for more adequate research on such ethical dilemmas.     

The perception of ethical dilemmas in clinical practice

The empirical diagnosis presented in this paper is based on interviews with nurse practitioners and physicians designed to elicit their perceptions on the nature and role of ethical dilemmas in clinical practice. Having selected five of these perceptions or views which were common and significant, the philosophical therapy offered consists in, first, a general discussion of ethical dilemmas and, second, a critical analysis of each of the five views with the aim of pointing out confusions and errors, the recognition of which can be of applied and practical help in the clinical setting.     

The practice of psychology in rural communities: potential ethical dilemmas

The practice of psychology in rural areas offers unique challenges for psychologists as they try to provide optimal care, often with a minimum of resources. Psychologists are frequently required to be creative and flexible in order to provide effective services to a wide range of clients. However, these unique challenges often confront psychologists with ethical dilemmas and problems for which their urban-based training has not prepared them. The author examines how certain characteristics of rural communities may lead to specific ethical dilemmas. By being a part of a small community, psychologists will inevitably face multiple relationship dilemmas. Confidentiality is harder to maintain in a small town, particularly with its informal information-sharing network. To provide services to meet community needs, with a limited number of referral options, psychologists typically need to be generalists. This may lead to concerns about scope of practice, training, and experience with diverse populations. Psychologists also face other competency issues, such as a lack of supervision and consultation resources. Other concerns addressed include the psychologist's personal life, and the blurring of professional and personal roles. Suggestions are made for coping with each of these ethical issues, although more quantitative research and discussion are needed on the practice of psychology in rural areas.     

Power and clinical psychology: a model for resolving power-related ethical dilemmas

This article considers power in clinical psychology. It is argued that power is present at every level of clinical psychologists' practice and can be used positively and negatively. Drawing on organizational, ethical, psychological, and personal influences, a heuristic problem-solving model for the process of understanding and resolving power-related ethical dilemmas is proposed. It is contended that such a model provides a humane and systematic process of understanding and working through power-related ethical dilemmas. It is argued that resolving power-related ethical issues cannot be achieved through the statement of absolute values but rather requires a process of understanding, action, and review. The model is used to draw out implications for promoting ethical practice and preventing the abuse of power in clinical psychology.     

Counselling in the Post Office: Facing up to the legal and ethical dilemmas

The legal and ethical dilemmas faced by counsellors working in organisations are outlined, together with the need for the counselling profession to set clear competency and supervision standards for practitioners.     

Stress,coping, and resources in mothers of adults with developmental disabilities

This study examined the relationship of various stressors, coping resources, and coping strategies on the level of stress reported by 147 mothers of adults with delayed development. A sense of mastery and the mother's health as well as financial well-being were significantly negatively related to stress. Coping behaviours of reframing of the problem and acquisition of social support were also significantly negatively related to stress. Implications of the results of this study for service providers are discussed.     

Expectation and burnout in the developmental disabilities field

Psychological burnout was assessed in staff members at workshops and community residences for the developmentally disabled. Participants also rated expectations for client progress and for their own contribution to clients. They reported on change in expectation since they entered the field. High expectations were related to low burnout; workers who reported experiencing large negative expectation change were most burned out. Burnout seemed to be prevented when staff members made an expectation shift from reliance on client progress to a sense of personal efficacy. This finding is discussed in terms of personal causation, internal control of reinforcement, and adaptation-level theory. There was little evidence of client depersonalization, a usual component of burnout. Such a burnout pattern may be a function of the ethic of community care for the developmentally disabled.     

Fine motor deficiencies in children with developmental coordination disorder and learning disabilities: an underlying open-loop control deficit

Thirty-two children with Developmental Coordination Disorder (DCD) and learning disabilities (LD) and their age-matched controls attending normal primary schools were investigated using kinematic movement analysis of fine-motor performance. Three hypotheses about the nature of the motor deficits observed in children with LD were tested: general slowness hypothesis, limited information capacity hypothesis, and the motor control mode hypothesis. Measures of drawing movements were analyzed under different task conditions using a Fitts' paradigm. In a reciprocal aiming task, the children drew straight-line segments between two targets 2.5 cm apart. Three Target Sizes were used (0.22, 0.44, and 0.88 cm). Children used an electronic pen that left no trace on the writing tablet. To manipulate the degree of open-loop movement control, the aiming task was performed under two different control regimes: discrete aiming and cyclic aiming. The kinematic analysis of the writing movements of the 32 children with DCD/LD that took part in the experimental study confirmed that besides learning disabilities they have a motor learning problem as well. Overall, the two groups did not differ in response time, nor did they respond differently according to Fitts' Law. Both groups displayed a conventional trade-off between Target Size and average Movement Time. However, while movement errors for children with DCD/LD were minimal on the discrete task, they made significantly more errors on the cyclic task. This, together with faster endpoint velocities, suggests a reduced ability to use a control strategy that emphasizes the terminal control of accuracy. Taken together, the results suggest that children with DCD/LD rely more on feedback during movement execution and have difficulty switching to a feedforward or open-loop strategy.     

Placebo effects in developmental disabilities: implications for research and practice

Recent clinical trials of secretin in children with autism showed robust placebo effects and no benefit of secretin over placebo. This article explores the reasons for the observed placebo effects, focusing on the heightening of positive expectancy by media attention and by the sensory experiences associated with intravenous injections. Comparisons are drawn with research involving other novel treatments and other clinical populations of children with developmental disabilities and neurobehavioral disorders. Research regarding mechanisms of placebo effects is reviewed, including patient and clinician attributes, expectancy effects, participation effects, changes in caregiver behavior, and conditioning. New evidence regarding the biological basis of placebo effects is briefly presented. Since placebo effects are ubiquitous and may operate by a variety of mechanisms, research design is critical in designing clinical trials and in evaluating other outcomes research. Measurement issues important for research in developmental disabilities are emphasized. Ethical concerns have been raised regarding the use of placebo in clinical research, but current analysis suggests that placebo controls are necessary and defensible on ethical grounds, if certain conditions are met. The study of placebo effects ("placebology") holds great promise as a new area of research in therapeutics. The author's research in the potential augmentation of stimulant effects in children with attention deficit/hyperactivity disorder (ADHD) by adding placebo in open label is briefly presented. The placebo has always been integral to the practice of medicine, but advances in scientific medicine and medical ethics have diminished the role and use of placebo in practice. An innovative approach to the ethical use of placebo is proposed.     

Environmental toxicants and developmental disabilities: a challenge for psychologists

Developmental, learning, and behavioral disabilities are a significant public health problem. Environmental chemicals can interfere with brain development during critical periods, thereby impacting sensory, motor, and cognitive function. Because regulation in the United States is based on limited testing protocols and essentially requires proof of harm rather than proof of lack of harm, some undefined fraction of these disabilities may reflect adverse impacts of this "vast toxicological experiment" (H. L. Needleman, as quoted in B. Weiss & P. J. Landrigan, 2000, p. 373). Yet the hazards of environmental pollutants are inherently preventable. Psychologists can help prevent developmental disabilities by mobilizing and affecting public policy, educating and informing consumers, contributing to interdisciplinary research efforts, and taking action within their own homes and communities to reduce the toxic threat to children.