The gap between law and ethics in human embryonic stem cell research: Overcoming the effect of U.S. Federal policy on research advances and public benefit

Key ethical issues arise in association with the conduct of stem cell research by research institutions in the United States. These ethical issues, summarized in detail, receive no adequate translation into federal laws or regulations, also described in this article. U.S. Federal policy takes a passive approach to these ethical issues, translating them simply into limitations on taxpayer funding, and foregoes scientific and ethical leadership while protecting intellectual property interests through a laissez faire approach to stem cell patents and licenses. Those patents and licenses, far from being scientifically and ethically neutral in effect, virtually prohibit commercially sponsored research that could otherwise be a realistic alternative to the federal funding gap. The lack of federal funding and related data-sharing principles, combined with the effect of U.S. patent policy, the lack of key agency guidance, and the proliferation of divergent state laws arising from the lack of Federal leadership, significantly impede ethical stem cell research in the United States, without coherently supporting any consensus ethical vision. Research institutions must themselves implement steps, described in the article, to integrate addressing ethical review with the many legal compliance issues U.S. federal and state laws create. The opinions expressed in this article are the author’s own, and are not necessarily the opinions of others, including Children’s Hospital Boston. Portions of earlier versions of this article were previously published by the American Bar Association and the New York State Bar Association.     

Public policy and employment of people with disabilities: exploring new paradigms

A "sea change" in public attitudes, legislation, and political power at the end of the 20th century in the United States has helped set the stage in the early 21st century for the entry of people with disabilities into the labor force. Major pieces of federal legislation have altered national policy with the intention of maximizing the work force participation of people with disabilities. At the same time, a new theoretical paradigm of disability has emerged, which emphasizes community inclusion, accommodation, and protection of civil rights. This "New Paradigm" of disability can be applied in concert with rigorous behavioral science methodologies to shed light on the outcomes of recent federal policy changes regarding the labor force participation of people with disabilities. In so doing, social science can be used in more meaningful ways to understand both the intended and unintended consequences of federal policy.     

A View of the violence contained in chronic fatigue syndrome

In this paper I ask whether there might be any one particular psychopathology likely to be linked specifically with the physical illness known as chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME), and whether CFS/ME aids and abets and 'fits' an original mental state. I think the question cannot yet be answered. However it is my hypothesis that in some personality structures the onset of CFS/ME following a physical illness exacerbates negativity and is an aspect of ordinary depression where there is a lowering of energy levels and a loss of zest for life, or it may reveal the pathological aspect of unresolved rage.
Depending on the degree of pathological disturbance, working with and through the rage may or may not result in a resolution of the symptoms of ME. In this paper I consider some of the problems in the transference and countertransference relationship, which make it extremely difficult to separate out reality from phantasy. There is then the further problem of the denial of the psyche by the patient as part of the violence inherent in the illness.
One case is presented, an example of ME in a borderline male patient in whom resolution could not be achieved.     

Improving Medicare coverage of psychological services for older Americans

Professional psychology's ability to meet older Americans' psychological needs and to simultaneously thrive as a profession will be closely tied to the federal Medicare program over the coming decades. Despite legislative changes in the 1980s providing professional autonomy to psychologists and expanding coverage for mental health services, Medicare coverage policies, reimbursement mechanisms, and organizational traditions continue to limit older Americans' access to psychological services. This article describes how psychologists can influence Medicare coverage policy. Specifically, the authors examine widely unrecognized policy processes and recent political developments and analyze the recent creation of a new Medicare counseling benefit, applying J. W. Kingdon's (1995) well-known model of policy change. These recent developments offer new opportunities for expanding Medicare coverage of psychological services, particularly in the areas of prevention, screening, and early intervention. The article provides an analysis to guide psychologists in engaging in strategic advocacy and incorporating psychological prevention and early intervention services into Medicare. As Medicare policy entrepreneurs, psychologists can improve the well-being of millions of Americans who rely on the national health insurance program and, in so doing, can help shape the future practice of psychology.     

Evaluating Attributions for an Illness Based Upon the Name: Chronic Fatigue Syndrome, Myalgic Encephalopathy and Florence Nightingale Disease

In recent years, considerable discussion has occurred about stigma surrounding the name given to an illness currently known as chronic fatigue syndrome (CFS). Although patients and medical personnel have expressed varying opinions on this issue, no studies have evaluated how beliefs about the illness change based upon the type of name used for diagnostic purposes. Proposals have been put forth to rename the illness with an eponym (a famous patient's or researcher's name) or with a less trivial sounding, more medically based type of name. In this study, attributions about CFS were measured in three groups of medical trainees. All groups read the same case study of a person with classic symptoms of chronic fatigue syndrome, with the only difference being in the type of name given. Trainees then were asked to provide attributions about certain aspects of the illness, including its cause, severity, and prognosis. Results suggested that, across name conditions, most trainees appeared to consider the symptom complex of CFS a serious illness resulting in poor quality of life. In addition, findings indicated that the name, chronic fatigue syndrome, may be regarded less seriously than the Myalgic Encephalopathy name with respect to some important aspects of the illness. In this study, specialty of medical trainee also played a role in how the illness was perceived.     

Psychology and the politics of same-sex desire in the United States: an analysis of three cases

Psychological science has assumed an increasingly explicit role in public policies related to same-sex desire in the United States. In this article, we present a historical analysis of the relationship between policy discourse and scientific discourse on homosexuality produced within U.S. psychology over the 20th and early 21st centuries through the lens of three cases: Bowers v. Hardwick (1986), Lawrence v. Texas (2003), and Perry v. Schwarzenegger (2010). Our analysis suggests that, for the majority of its disciplinary history, psychology produced knowledge that supported a status quo of legal and cultural subordination for same-sex-attracted individuals. The discipline's shift in understanding of homosexuality, reflected in a 1975 policy statement of the American Psychological Association, reversed this relationship and opened up space for advocacy for social and political change regarding homosexuality. Our analysis of policy decisions rendered by the courts reveals the increasingly important role psychological science has assumed in challenging the legal subordination of same-sex-attracted individuals, though the basis upon which psychological science has sought to inform policy remains limited. We conclude with a critical discussion of the type of knowledge claims psychologists have traditionally used to advocate for gay and lesbian rights, suggesting the vitality of a narrative approach which can reveal the meaning individuals make of legal subordination and political exclusion.     

Counterattitudinal Advocacy on a Matter of Prejudice: Effects of Distraction,Commitment, and Personal Importance1

White students were asked to advocate a tuition policy beneficial to Blacks at either high or low personal cost. Advocates wrote an essay while undistracted or distracted, or only committed to writing it. More attitude change occurred when the policy was personally costly (important) and advocates were undistracted. Distraction may disrupt the dominant covert cognitive response, which is normally favorable to a freely agreed‐to advocacy. This makes anti‐advocacy thoughts more likely and the advocacy seem weaker, especially when the advocacy involves conflicted racial beliefs whose contemplation under load activates negative stereotypes. Some participants wrote essays that defied their agreement to endorse the policy, and distraction enhanced their attitude change. In this case, distraction presumably disrupted an anti‐advocacy dominant cognitive response. Thought listings supported these interpretations. Finally, commitment alone led to attitude change. Coun‐terattitudinal advocacy fosters attitude change in prejudice‐relevant domains if conditions support advocacy‐favorable thoughts during advocacy.     

Investing in our future: unrealized opportunities for funding graduate psychology training

PURPOSE: Changes in the health care environment have brought challenges and opportunities to the field of psychology. Practitioners have been successful in modifying service models to absorb losses of financial support for behavioral health care, due to managed care and public policy changes, while simultaneously managing the growing need for these services. However, in this reactive mode of responding to evolutions in the health care system, the field of psychology has at times lost sight of the long-term vision required to promote psychology's inclusion in the health care system of the future. In particular, a focus on training psychologists and ensuring the availability of funding to support these activities must be a priority in planning for the future. This article provides an overview of federal programs that currently offer funding for psychology training, as well as other opportunities for federal funding that have been unrealized. Details regarding advocacy efforts that were required to secure available sources of funding are given, followed by consideration of strategies for taking advantage of existing resources and prioritizing advocacy for additional funding. CONCLUSION: Funding for psychology training provides an avenue for increasing the number of well-trained psychologists who can serve patients' mental and behavioral health needs and thereby improve health outcomes. Moreover, capitalizing on available funding opportunities for psychology training and promoting efforts to expand these opportunities will help ensure that the field of psychology is positioned to remain an important contributor to the health care system of the future.     

Symptoms,impairment and illness intrusiveness–their relationship with depression in women with CFS/ME

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is an illness in which physiological and psychological factors are believed to interact to cause and maintain CFS/ME in an individual predisposed to it. The various symptoms and impairments associated with CFS/ME have a large impact on quality of life. The purpose of the present study was to identify the extent to which the core symptoms and impairments associated with CFS/ME relate to depression in women with CFS/ME, and to discover whether these relationships were mediated by illness intrusiveness. CFS/ME was found to be a highly intrusive illness, intruding into more life domains and to a greater degree than other illnesses. The effects of both symptoms and impairment on depression were, in part, mediated by illness intrusiveness. Although symptoms severity and impairment had both direct and indirect effects on depression, illness intrusiveness was the strongest predictor of depression.     

Healthcare,Responsibility and Golden Opportunities

When it comes to determining how healthcare resources should be allocated, there are many factors that could—and perhaps should—be taken into account. One such factor is a patient’s responsibility for his or her illness, or for the behavior that caused it. Policies that take responsibility for the unhealthy lifestyle or its outcomes into account—responsibility-sensitive policies—have faced a series of criticisms. One holds that agents often fail to meet either the control or epistemic conditions on responsibility with regard to their unhealthy lifestyles or their outcomes. Another holds that even if patients sometimes are responsible for these items, we cannot know whether a particular patient is responsible for them. In this article, we propose a type of responsibility-sensitive policy that may be able to surmount these difficulties. Under this type of policy, patients are empowered to change to a healthier lifestyle by being given what we call a ‘Golden Opportunity’ to change. Such a policy would not only avoid concerns about patients’ fulfilment of conditions on responsibility for their lifestyles, it would also allow healthcare authorities to be justified in believing that a patient who does not change her lifestyle is responsible for the unhealthy lifestyle. We conclude with a discussion of avenues for further work, and place this policy in the broader context of the debate on responsibility for health.

     

Interpretation of symptoms in chronic fatigue syndrome.

Chronic fatigue syndrome (CFS) is an illness characterised by fatigue and other symptoms. Both psychological and biological aetiological factors have been proposed, but the disorder is of uncertain origin. The aetiology of the symptoms is therefore ambiguous. It has been suggested (a) that patients with CFS tend to interpret their symptoms as indicating physical illness and (b) they tend not to interpret these symptoms in terms of negative emotion. In order to test these hypotheses we developed a self-report questionnaire to assess the interpretation of symptoms in patients with CFS. It was administered to patients with CFS, patients with depression, patients with multiple sclerosis (MS), and normal controls. Preliminary results suggest that the measure has acceptable psychometric properties. Patients with CFS were more likely than either depressed patients or normal controls to interpret symptoms (characteristic of CFS) in terms of physical illness, but did not differ in this from the MS patients. When compared with all three other groups (including the MS patients), the patients with CFS were least likely to interpret symptoms in terms of negative emotional states. The theoretical and clinical implications of the findings are discussed.     

Evolving research misconduct policies and their significance for physical scientists

Scientific misconduct includes the fabrication, falsification, and plagiarism (FFP) of concepts, data or ideas; some institutions in the United States have expanded this concept to include “other serious deviations (OSD) from accepted research practice.” It is the absence of this OSD clause that distinguishes scientific misconduct policies of the past from the “research misconduct” policies that should be the basis of future federal policy in this area. This paper introduces a standard for judging whether an action should be considered research misconduct as distinguished from scientific misconduct: by this standard, research misconduct must involve activities unique to the practice of science and must have the potential to negatively affect the scientific record. Although the number of cases of scientific misconduct is uncertain (only the NIH and the NSF keep formal records), the costs are high in terms of the integrity of the scientific record, diversions from research to investigate allegations, ruined careers of those eventually exonerated, and erosion of public confidence in science. Existing scientific misconduct policies vary from institution to institution and from government agency to government agency; some have highly developed guidelines that include OSD, others have no guidelines at all. One result has been that the federal False Claims Act has been used to pursue allegations of scientific misconduct. As a consequence, such allegations have been adjudicated in federal courts, rather than judged by scientific peers. The federal government is now establishing a first-ever research misconduct policy that would apply to all research funded by the federal government regardless of which agency funded the research or whether the research was carried out in a government, industrial or university laboratory. Physical scientists, who up to now have only infrequently been the subject of scientific misconduct allegations, must nonetheless become active in the debate over research misconduct policies and how they are implemented since they will now be explicitly covered by this new federal wide policy. Disclaimer: The authors are grateful for the support for conduct of this research provided by the United States Department of Energy (DOE). The views expressed in this paper are solely those of the authors and were formed and expressed without reference to positions taken by DOE or the Pacific Northwest National Laboratory (PNNL). The views of the authors are not intended either to reflect or imply positions of DOE or PNNL.     

Chronic Fatigue Syndrome: The Need for Subtypes

Chronic fatigue syndrome (CFS) is an important condition confronting patients, clinicians, and researchers. This article provides information concerning the need for appropriate diagnosis of CFS subtypes. We first review findings suggesting that CFS is best conceptualized as a separate diagnostic entity rather than as part of a unitary model of functional somatic distress. Next, research involving the case definitions of CFS is reviewed. Findings suggest that whether a broad or more conservative case definition is employed, and whether clinic or community samples are recruited, these decisions will have a major influence in the types of patients selected. Review of further findings suggests that subtyping individuals with CFS on sociodemographic, functional disability, viral, immune, neuroendocrine, neurology, autonomic, and genetic biomarkers can provide clarification for researchers and clinicians who encounter CFS characteristically confusing heterogeneous symptom profiles. Treatment studies that incorporate subtypes might be particularly helpful in better understanding the pathophysiology of CFS. This review suggests that there is a need for greater diagnostic clarity, and this might be accomplished by subgroups that integrate multiple variables including those in cognitive, emotional, and biological domains.     

Rejecting the Null: Research and Social Justice Means Asking Different Questions

The focus of this article is on the specific ethical issues related to social justice research and the practical implications of engaging in social justice research, including the potential impact of research results on practice, policy, and advocacy at the local and national level. Specific recommendations are offered, including identifying research questions that advance social justice, managing researcher bias and power differentials, improving research methodologies, disseminating research, and giving back and advocating for social justice concerns.     

Chronic Fatigue Syndrome Severity and Depression: The Role of Secondary Beliefs

Chronic fatigue syndrome (CFS) is a poorly understood illness that is characterized by profound and prolonged exhaustion and has no clear pathological marker. This study investigated the role of illness severity and secondary beliefs in depression among a CFS cohort, using the A–B–C framework of Rational Emotive Behavioral Therapy. Empirical research has consistently found that CFS patients tend to hold more negative cognitions about their illness, which could be associated with greater severity and emotional deficits. Specifically, secondary beliefs were explored as a mediating factor; as evidence suggests that secondary beliefs can result in dysfunctional emotions and/or behaviors, such as depression. Furthermore, it is estimated that up to 80% of CFS patients concurrently have depression. There were 156 participants with CFS who completed a questionnaire pack, which included the revised version of the Illness Perception Questionnaire, the Secondary Beliefs Scale (SBS), and the Cardiac Depression Scale. Hierarchical regression analysis revealed that secondary beliefs mediated the relationship between illness severity and depression. Specifically, the approval and comfort subscales of the SBS were significantly associated with depression. The current findings indicated that secondary beliefs could be an important focus in treatment of depression in chronic illness. As the mediating role of secondary beliefs is a new research finding, it is advised that further exploratory research is required.     

The center/satellite model: grand strategy for change

Whatever happened to the federal monies that used to support NDEA and EPDA counseling and guidance institute programs? Starting in 1971, an abrupt change in USOE policy led to the development of a new program, one that was no longer as much of a counseling and guidance program as it was a national and regional grand strategy for institutional and organizational change. In this article the author traces the new program from its origins during the days of the NDEA Institutes, and he also describes its potential as an instrument for change.     

Resource Document on Access to Firearms by People with Mental Disorders

The American Psychiatric Association, (“APA”), with more than 36,000 members at present, is the Nation's leading organization of physicians who specialize in psychiatry. APA provides for education and advocacy and develops policy through Position Statements. It promotes enhanced knowledge of particular topics relevant to psychiatric practice and patient care through Resource Documents. Since 1993, the APA has developed various positions and resource materials related to firearms and mental illness, incorporating evolving themes as new issues emerge. This paper reflects the APA's 2014 Resource Document on “Access to Firearms by People with Mental Disorders.” This article is derived from work done on behalf of American Psychiatric Association and remains the property of APA. It has been altered only in response to the requirements of peer review. Copyright © 2015 American Psychiatric Association. Published with permission (original adopted by the American Psychiatric Association 2014).     

The Danish Biofuel Debate: Coupling Scientific and Politico-Economic Claims

What role does scientific claims-making play in the worldwide promotion of biofuels for transport, which continues despite serious concerns about its potentially adverse social and environmental effects? And how do actors with very different and conflicting viewpoints on the benefits and drawbacks of biofuels enrol scientific authority to support their positions? The sociological theory of functional differentiation combined with the concept of advocacy coalition can help in exploring this relationship between scientific claims-making and the policy stance of different actors in public debates about biofuels. In Denmark two distinct scientific perspectives about biofuels map onto the policy debates through articulation by two competing advocacy coalitions. One is a reductionist biorefinery perspective originating in biochemistry and neighbouring disciplines. This perspective works upwards from the molecular level and envisions positive synergies in the use of biomass. The other is a holistic bioscarcity perspective originating in life-cycle analysis and ecology. This perspective works downwards from global resource scope conditions, and envisions negative consequences from an increased reliance on biomass. Understanding how these scientific perspectives and policy stances are coupled sheds light on three contentious policy questions: how Denmark should include biomass in its energy provision, what role Denmark might play in the global development of biofuels and what kind of subsidy schemes should be implemented.     

Detecting Chronic Fatigue Syndrome: The Role of Counselors

Chronic fatigue syndrome (CFS) is a physical illness, the cause of which is unknown. Known also as chronic fatigue immune dysfunction syndrome and myalgic encepalomyelitis, the illness has a probable incidence of 2 to 3 per 1,000 among adults and adolescents and is seen also in children. Only a small minority of cases are diagnosed, and only 25% of those suffering from CFS suspect this as the diagnosis. For this reason, counselors often see persons with unsuspected cases and may play an important role in detecting and referring these clients appropriately. Case histories are used to illustrate how suspected cases of CFS can be distinguished from depression and other mental health conditions in counseling practice.     

Counselor Advocacy: Affecting Systemic Change in the Public Arena

This article provides direction for developing advocacy competency in the public arena. Direction for increasing public awareness, affecting public policy, and influencing legislation is presented. A process of creating change entailing establishing a sense of social/political urgency regarding an issue, organizing and educating a group of people to initiate social/political change, developing a vision and strategy for such change, communicating the vision for that change, empowering broad‐based action, and generating actual change is detailed.