Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities

Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed.     

Dualism and its Importance for Medicine

Cartesian dualism has been viewed by medical theorists to be oneof the chief causes of a reductionist/mechanistic treatment ofthe patient. Although I aver that Cartesian dualism is one culprit for the misapprehension of the genuine treatment of patients in termsof both mind and body, I argue that interactive dualism whichstresses the interaction of mind and body is essential to treatpatients with dignity and compassion. Thus, adequate medical carethat is humanistic in nature is difficult (if not impossible)to achieve without physicians adhering to a dualistic frameworkin which the body and person is treated during illness.     

The Meaning vs. The Medical Model in the Empirically Supported Treatment Program: A Consideration of The Empirical Evidence

A review of the debate on the Empirically Supported Treatment Program is presented. It is argued that underlying the specifics of the debate are fundamentally incompatible paradigms: a meaning vs. a medical model. The findings from two gold standard multi-site studies are reviewed to conclude that the control condition meets requirements for an empirically supported treatment. The empirical finding of the failure of clinical training to improve treatment outcomes is explained by the focus on rational factors in training. It is recommended that training of therapists focus on enhancing experiential capacity rather than mastery of manualized treatment approaches.     

Communication flow and change theory within a family therapy supervision model

This article portrays a model of family therapy clinical supervision using change theory that is most appropriate for use with the videotape, audiotape, case presentation and debriefing from the live session. The most powerful tool during this process is that of communication and assessment of change theorys tools of confidence and conviction. The concepts presented are meant to add an additional dimension to family therapy supervision in cooperation of other theories, not as an end in themselves.Special thanks to Ms. Geri Koncilja of the Informational Technology Center at Colorado State University, Pueblo for illustration and graphic assistance.     

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.     

A call to restructure the drug development process: Government over-regulation and non-innovative late stage (Phase III) clinical trials are major obstacles to advances in health care

The history of drug/vaccine development has included major advances guided primarily by risk/benefit analyses concerning the innovative agent, not by evidence-based clinical trials (Phase I–IV). Because the approval for new drugs is hindered under the present process, the system requires restructuring. The Phase I/II study period should be more flexible, using the “environment of knowledge” about the new agent, plus risk/benefit assessments. Phase III, as presently constructed, does not add new adverse events data, it provides a narrower profile of drug efficacy than properly done Phase II studies, and placebo-controlled trials continue to raise unresolved ethical and social issues. Phase III studies should be abandoned for most drugs, and substituted with properly powered Phase II doseranging studies plus careful post-marketing surveillance. Phase III should be a penalty for poor drug development, not a regulatory requirement. To accomplish efficient drug development, greater cooperation between pharmaceutical companies and governments in developing clinical trials is needed rather than over-regulation. These changes will synchronize the drug development and regulatory process with the current rapid drug discovery process, reduce drug development time and cost, and improve patient care. The author is Adjunct Professor of Medicine, Weill Medical College of Cornell University, New York, New York, USA.     

The placebo effect in popular culture

This paper gives an overview of the placebo effect in popular culture, especially as it pertains to the work of authors Patrick O’Brian and Sinclair Lewis. The beloved physician as placebo, and the clinician scientist as villain are themes that respectively inform the novels, The Hundred Days and Arrowsmith. Excerpts from the novels, and from film show how the placebo effect, and the randomized clinical trial, have emerged into popular culture, and evolved over time. An earlier version of this paper was presented at an international conference, “Placebo: Its Action and Place in Health Research Today,” held in Warsaw, Poland on 12–13 April, 2003.     

Informed consent and the use of placebo in poland: Ethical and legal aspects

The concept of informed consent was one of the most fruitful ideas that deeply changed the relationships between physicians and their patients from paternalism to respect for the personal autonomy of subjects needing professional medical care. The great progress in medicine, also involving the pharmaceutical industry, has created an increasing need to perform different clinical and experimental trials. The evolution of clinical research in the last decades has influenced strongly the design of these studies. One of the most important changes in this field has been the use of placebo groups in double-blind controlled studies. The controversies have involved not only the use of placebo when standard or proven treatment was available, but also some specific problems concerning the procedure of obtaining informed consent in such trials. This paper briefly presents the evolution of informed consent in Poland as well as different ethical and legal problems concerning informed consent and the use of placebo controls in clinical trials. An earlier version of this paper was presented at an international conference, “Placebo: Its Action and Place in Health Research Today,” held in Warsaw, Poland on 12–13 April, 2003.     

Comorbidity between and within childhood externalizing and internalizing disorders: reflections and directions

The term and concept of lcomorbidity has been mired in controversy, although there is little question that the existence of covariation among psychiatric diagnoses poses significant challenges to current models of psychiatric classification and diagnosis. The papers in this Special Section underscore a number of important issues relevant to the comorbidity between and within childhood externalizing and internalizing disorders, and illustrate both methodological and substantive reasons for such comorbidity. Weiss, Susser, and Catron's distinction among common, broad-band specific, and narrow-band specific features provides a helpful framework for understanding the comorbidity of childhood externalizing and internalizing disorders (B, Weiss, K. Susser, & T. Catron, 1998). Hierarchical models of psychopathology help to dissolve the distinction between splitters and lumpers and point to variables that may elucidate the etiology of externalizing and internalizing disorders.     

Response to Difficult Patients in Group Analysis: The Personification of I:A/M

The author focuses on the application of Hopper's proposal of an additional basic assumption (I:A/M) using a model of clinicians' theories: bridging theory, psychological theory, and clinical theory (Michels, 1999). This paper will describe the potential for advances in understanding particular group formations seen in clinical practice and other settings.