ISSUES AND IMPLICATIONS OF ESTABLISHING GUIDELINES FOR THE USE OF BEHAVIORAL TECHNIQUES

Several guidelines surrounding the use of behavioral procedures have recently appeared, the best of which is that of the National Association of Retarded Citizens (NARC). Some issues and implications of the establishment of guidelines are briefly reviewed in the context of the NARC guidelines. Issues include the factual versus opinion bases for guidelines and the need to continue the development of explicit behavioral criteria for assessing staff competence. Implications for programs include the impact of guidelines on professional boundaries, administrative decision-making, and budgeting, together with the dangers of expanding the regulatory bureaucracy. Several miscellaneous impacts are noted, including a potential for curbing innovative behavioral technology.     

Recommandations de l’ITC pour la traduction et l’adaptation de tests (seconde édition)

The second edition of the ITC guidelines for translating and adapting tests was prepared between 2005 and 2015 to improve upon the first edition, and to respond to advances in testing technology and practices. The 18 guidelines are organized into six categories to facilitate their use: pre-condition (3), test development (5), confirmation (4), administration (2), scoring and interpretation (2), and documentation (2). For each guideline, an explanation is provided along with suggestions for practice. A checklist is provided to improve the implementation of the guidelines.     

Fabry disease in genetic counseling practice: recommendations of the National Society of Genetic Counselors

The objective of this document is to provide health care professionals with recommendations for genetic counseling and testing of individuals with a suspected or confirmed diagnosis of Fabry disease, with a family history of Fabry disease, and those identified as female carriers of Fabry disease. These recommendations are the opinions of a multicenter working group of genetic counselors, medical geneticists, and other health professionals with expertise in Fabry disease counseling, as well as an individual with Fabry disease who is a founder of a Fabry disease patient advocacy group in the United States. The recommendations are U.S. Preventive Task Force Class III, and they are based on clinical experience, a review of pertinent English-language articles, and reports of expert committees. This document reviews the genetics of Fabry disease, the indications for genetic testing and interpretation of results, psychosocial considerations, and references for professional and patient resources. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. The professional judgment of a healthcare provider, familiar with the facts and circumstances of a specific case, will always supersede these recommendations.     

Beyond conflict of interest: the responsible conduct of research

This paper reports data and scholarly opinion that support the perception of systemic flaws in the management of scientific professions and the research enterprise; explores the responsibility that professional status places on the scientific professions, and elaborates the concept of the responsible conduct of research (RCR). Data are presented on research misconduct, availability of research guidelines, and perceived research quality. An earlier version of this paper was presented at an International Conference on “Conflict of Interest and its Significance in Science and Medicine” held in Warsaw, Poland, 5–6 April, 2002. The opinions expressed herein are those of the author and do not necessarily represent the views of the Office of Research Integrity, the U.S. Department of Health and Human Services, or any other federal agency.     

From case management to prevention of scientific dishonesty in Denmark

In 1992, The Danish Medical Research Council established a national committee on scientific dishonesty with the twofold task of handling cases of scientific misconduct and taking preventive initiatives. Scientific dishonesty was proven in only five cases, but in another nine cases lesser degrees of deviations from good scientific practice were found. The experiences from a total of 24 treated cases indicated that three key areas were at the basis of most of the accusations and the deviations from good practice: uncertainty about 1) authorship, about 2) rights and duties to use scientific data and about 3) agreements at the initiation of joint studies. As a consequence guidelines on good practice have been issued on these key subjects. An earlier version of this paper was presented at a symposium, Scientific Misconduct. An International Perspective, organised by The Medical University of Warsaw, 16 November, 1998.     

Genetic Counseling for Fragile X Syndrome: Updated Recommendations of the National Society of Genetic Counselors

These recommendations describe the minimum standard criteria for genetic counseling and testing of individuals and families with fragile X syndrome, as well as carriers and potential carriers of a fragile X mutation. The original guidelines (published in 2000) have been revised, replacing a stratified pre- and full mutation model of fragile X syndrome with one based on a continuum of gene effects across the full spectrum of FMR1 CGG trinucleotide repeat expansion. This document reviews the molecular genetics of fragile X syndrome, clinical phenotype (including the spectrum of premature ovarian failure and fragile X-associated tremor-ataxia syndrome), indications for genetic testing and interpretation of results, risks of transmission, family planning options, psychosocial issues, and references for professional and patient resources. These recommendations are the opinions of a multicenter working group of genetic counselors with expertise in fragile X syndrome genetic counseling, and they are based on clinical experience, review of pertinent English language articles, and reports of expert committees. These recommendations should not be construed as dictating an exclusive course of management, nor does use of such recommendations guarantee a particular outcome. The professional judgment of a health care provider, familiar with the facts and circumstances of a specific case, will always supersede these recommendations.     

Introducing ethics and engineering: the case of Delft University of Technology

This article focuses mainly on (1) the policy of Delft University of Technology since 1992 as regards the university-wide introduction of a compulsory course on ethics and engineering, and (2) the ideal structure of such a course, including the educational goals of the course. Dr. G. J. Scheurwater is Senior policy-advisor to the Board of Delft University of Technology. Prof. S. J. Doorman is Chairman of the Advisory Committee on Ethics of Delft University of Technology.     

Diagnostic Work through Evidence-Based Guidelines: Avoiding Gaps Between Development and Implementation of a Guideline for Problem Behaviour in Elderly Care

Diagnostic work is the reflexive work of figuring out what issues are at stake and determining the scope for action. This work is not generally accommodated by evidence-based guidelines, which generally promote a uniform, predefined approach to solving healthcare problems that risk narrowing the opportunities for diagnostic work in healthcare practice. Consequently, guidelines are often criticised as too general to solve situated, individual healthcare problems and gaps between guidelines and their implementation are often reported. The Netherlands has developed a guideline for problem behaviour in elderly care, explicitly designed for diagnostic work, thus stimulating a situated approach. Relational problem behaviour is highly embedded in its context. The guideline stimulates diagnostic work, which helps to unravel problem behaviour and is opening alternatives in elderly care. Diagnostic work does not transfer guideline development problems to healthcare practice, but simply structures the decision-making process without giving a predefined answer. Diagnostic work is thus important to consider in order to avoid a gap between guideline development and implementation.     

ITC Guidelines on Quality Control in Scoring,Test Analysis,and Reporting of Test Scores

The Quality Control (QC) Guidelines are intended to increase the efficiency, precision, and accuracy of the scoring, analysis, and reporting process of testing. The QC Guidelines focus on large-scale testing operations where multiple forms of tests are created for use on set dates. However, they may also be used for a wide variety of other testing situations and assessment techniques and for almost any situation in which assessment occurs. The QC Guidelines are applicable in any form of test administration, including paper and pencil tests and the ever-increasing computerized assessments via the Internet or offline.     

Human and Animal Subjects of Research: The Moral Significance of Respect versus Welfare

Human beings with diminished decision-making capacities are usually thought to require greater protections from the potential harms of research than fully autonomous persons. Animal subjects of research receive lesser protections than any human beings regardless of decision-making capacity. Paradoxically, however, it is precisely animals’ lack of some characteristic human capacities that is commonly invoked to justify using them for human purposes. In other words, for humans lesser capacities correspond to greater protections but for animals the opposite is true. Without explicit justification, it is not clear why or whether this should be the case. Ethics regulations guiding human subject research include principles such as respect for persons—and related duties—that are required as a matter of justice while regulations guiding animal subject research attend only to highly circumscribed considerations of welfare. Further, the regulations guiding research on animals discount any consideration of animal welfare relative to comparable human welfare. This paper explores two of the most promising justifications for these differences␣between the two sets of regulations. The first potential justification points to lesser moral status for animals on the basis of their lesser capacities. The second potential justification relies on a claim about the permissibility of moral partiality as␣found in common morality. While neither potential justification is sufficient to justify the regulatory difference as it stands, there is possible common ground between supporters of some regulatory difference and those rejecting the current difference.