Rebecca Johnson

The far-reaching effects of believing people can change: implicit theories of personality shape stress, health, and achievement during adolescence.

The belief that personality is fixed (an entity theory of personality) can give rise to negative reactions to social adversities. Three studies showed that when social adversity is common-at the transition to high school--an entity theory can affect overall stress, health, and achievement. Study 1 showed that an entity theory of personality, measured during the 1st month of 9th grade, predicted more negative immediate reactions to social adversity and, at the end of the year, greater stress, poorer health, and lower grades in school. Studies 2 and 3, both experiments, tested a brief intervention that taught a malleable (incremental) theory of personality--the belief that people can change. The incremental theory group showed less negative reactions to an immediate experience of social adversity and, 8 months later, reported lower overall stress and physical illness. They also achieved better academic performance over the year. Discussion centers on the power of targeted psychological interventions to effect far-reaching and long-term change by shifting interpretations of recurring adversities during developmental transitions.

A review of ethical issues in dementia

Dementia raises many ethical issues. The present review, taking note of the fact that the stages of dementia raise distinct ethical issues, focuses on three issues associated with stages of dementias progression: (1) how the emergence of preclinical and asymptomatic but at-risk categories for dementia creates complex questions about preventive measures, risk disclosure, and protection from stigma and discrimination; (2) how despite efforts at dementia prevention, important research continues to investigate ways to alleviate clinical dementias symptoms, and requires additional human subjects protections to ethically enroll persons with dementia; and (3) how in spite of research and prevention efforts, persons continue to need to live with dementia. This review highlights two major themes. First is how expanding the boundaries of dementias such as Alzheimers to include asymptomatic but at-risk persons generate new ethical questions. One promising way to address these questions is to take an integrated approach to dementia ethics, which can include incorporating ethics-related data collection into the design of a dementia research study itself. Second is the interdisciplinary nature of ethical questions related to dementia, from health policy questions about insurance coverage for long-term care to political questions about voting, driving, and other civic rights and privileges to economic questions about balancing an employers right to a safe and productive workforce with an employees rights to avoid discrimination on the basis of their dementia risk. The review highlights these themes and emerging ethical issues in dementia.

US state variation in autism insurance mandates: Balancing access and fairness:

This article examines how nations split decision-making about health services between federal and sub-federal levels, creating variation between states or provinces. When is this variation ethically acceptable? We identify three sources of ethical acceptability—procedural fairness, value pluralism, and substantive fairness—and examine these sources with respect to a case study: the fact that only 30 out of 51 US states or territories passed mandates requiring private insurers to offer extensive coverage of autism behavioral therapies, creating variation for privately insured children living in different US states. Is this variation ethically acceptable? To address this question, we need to analyze whether mandates go to more or less needy states and whether the mandates reflect value pluralism between states regarding government’s role in health care. Using time-series logistic regressions and data from National Survey of Children with Special Health Care Needs, Individual with Disabilities Education Act, legislature political composition, and American Board of Pediatrics workforce data, we find that the states in which mandates are passed are less needy than states in which mandates have not been passed, what we call a cumulative advantage outcome that increases between-state disparities rather than a compensatory outcome that decreases between-state disparities. Concluding, we discuss the implications of our analysis for broader discussions of variation in health services provision.

Risks of phase I research with healthy participants: A systematic review.

Background/aims: Tragedies suggest that phase I trials in healthy participants may be highly risky. This possibility raises concern that phase I trials may exploit healthy participants to develop new therapies, making the translation of scientific discoveries ethically worrisome. Yet, few systematic data evaluate this concern. This article systematically reviews the risks of published phase I trials in healthy participants and evaluates trial features associated with increased risks. Methods: Data on adverse events and trial characteristics were extracted from all phase I trials published in PubMed, Embase, Cochrane, Scopus, and PsycINFO (1 January 2008–1 October 2012). Inclusion criteria were phase I studies that enrolled healthy participants of any age, provided quantitative adverse event data, and documented the number of participants enrolled. Exclusion criteria included (1) adverse event data not in English, (2) a “challenge” study in which participants were administered a pathogen, and (3) no quantitative information about serious adverse events. Data on the incidence of adverse events, duration of adverse event monitoring, trial agent tested, participant demographics, and trial location were extracted. Results: In 475 trials enrolling 27,185 participants, there was a median of zero serious adverse events (interquartile range = 0–0) and a median of zero severe adverse events (interquartile range = 0–0) per 1000 treatment group participants/day of monitoring. The rate of mild and moderate adverse events was a median of 1147.19 per 1000 participants (interquartile range = 651.52–1730.9) and 46.07 per 1000 participants/adverse event monitoring day (interquartile range = 17.80–77.19). Conclusion: We conclude that phase I trials do cause mild and moderate harms but pose low risks of severe harm. To ensure that this conclusion also applies to unpublished trials, it is important to increase trial transparency.

Identifiable Characteristics and Potentially Malleable Beliefs Predict Stigmatizing Attributions Toward Persons With Alzheimer’s Disease Dementia: Results of a Survey of the U.S. General Public

ABSTRACT The general public’s views can influence whether people with Alzheimer’s disease (AD) experience stigma. The purpose of this study was to understand what characteristics in the general public are associated with stigmatizing attributions. A random sample of adults from the general population read a vignette about a man with mild Alzheimer’s disease dementia and completed a modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS). Multivariable ordered logistic regressions were used to examine relationships between personal characteristics and FS-ADS ratings. Older respondents expected that persons with AD would receive less support (OR = 0.82, p = .001), have social interactions limited by others (OR = 1.13, p = .04), and face institutional discrimination (OR = 1.13, p = .04). Females reported stronger feelings of pity (OR = 1.57, p = .03) and weaker reactions to negative aesthetic features (OR = 0.67, p = .05). Those who believed strongly that AD was a mental illness rated symptoms more severely (OR = 1.78, p = .007). Identifiable characteristics and beliefs in the general public are related to stigmatizing attributions toward AD. To reduce AD stigma, public health messaging campaigns can tailor information to subpopulations, recognizable by their age, gender, and beliefs.

Views about responsibility for alcohol addiction and negative evaluations of naltrexone

BackgroundMoral philosophers have debated the extent to which persons are individually responsible for the onset of and recovery from addiction. Empirical investigators have begun to explore counselors’ attitudes on these questions. Meanwhile, a separate literature has investigated counselors’ negative attitudes towards naltrexone, an important element of medication-assisted treatment for alcohol addiction. The present study bridges the literature on counselor views about responsibility for addiction with the literature on attitudes towards naltrexone. It investigates the extent to which a counselor’s views of individual responsibility for alcohol addiction are related to that counselor’s views of naltrexone.MethodsUsing a vignette-based survey of 117 addiction treatment professionals, the study analyzes the relationship between an addiction counselor’s views about individual responsibility for alcohol addiction and using naltrexone to treat it.ResultsWe find a significant difference in counselors who assign greater responsibility to a person for the onset of alcohol addiction. They agreed more strongly with several objections to naltrexone, including worries about compliance, naltrexone’s side effects outweighing its benefits, naltrexone treating symptoms but not underlying causes, and the idea that medication may undermine a person’s motivation to recover. Combined views of greater responsibility for addiction’s onset and recovery also significantly predicted stronger agreement with objections.ConclusionsWe conclude that there is a strong relationship between a counselor assigning higher individual responsibility for addiction and holding more negative views about naltrexone. The study also sheds light on one reason why the model of addiction as a brain disease has had limited impact on clinical practice.

The ethical boundaries of patient and advocate influence on DSM-5.

&NA;This article discusses the relationship between disease-advocacy groups and the revision process for the Diagnostic and Statistical Manual of Mental Disorders. We discuss three examples in which patient-advocacy groups engaged with the DSM-5 revision process: Autism Speaks’ worries about the contraction of the autism diagnostic category, the National Alliance on Mental Illness’s support for the inclusion of psychosis risk syndrome, and B4U-ACT’s critique of the expansion of pedophilia. After a descriptive examination of the cases, we address two prescriptive questions. First, what is the ethical basis for patient and advocate influence on DSM diagnoses? Second, how should the American Psychiatric Association proceed when this influence comes into conflict with other goals of the revision process? We argue that the social effects of, and values embedded in, psychiatric classification, combined with patient and advocates’ experiential knowledge about those aspects of diagnosis, ethically justify advocate influence in relation to those particular matters. However, this advocate influence ought to have limits, which we briefly explore. Our discussion has implications for discussions of disease categories as loci for social movements, for analyses of the expanding range of processes and institutions that advocacy groups target, and for broader questions regarding the aims of the DSM revision process.

ECIS technology reveals that monocytes isolated by CD14+ve selection mediate greater loss of BBB integrity than untouched monocytes, which occurs to a greater extent with IL-1β activated endothelium in comparison to TNFα

Background We have previously shown that TNFα and IL-1β differentially regulate the inflammatory phenotype of human brain endothelial cells (hCMVECs). In this regard, IL-1β treatment was considerably more potent than TNFα at increasing expression of inflammatory chemokines and leukocyte adhesion molecules. We therefore hypothesised that interaction of the hCMVECs with human monocytes would also be dependent on the activation status of the endothelium. Therefore, the primary aim of this study was to assess whether brain endothelial cells activated by IL-1β or TNFα differed in their interaction with monocytes. Methods Monocyte interaction was measured using the real time, label-free impedance based ECIS technology, to evaluate endothelial barrier integrity during monocyte attachment and transendothelial migration. Results ECIS technology revealed that there was a greater loss of barrier integrity with IL-1β activation and this loss lasted for longer. This was expected and consistent with our hypothesis. However, more striking and concerning was the observation that the method of monocyte enrichment greatly influenced the extent of endothelial barrier compromise. Importantly, we observed that positively isolated monocytes (CD14+ve) caused greater reduction in barrier resistance, than the negatively selected monocytes (untouched). Analysis of the isolated monocyte populations revealed that the CD14+ve isolation consistently yields highly pure monocytes (>92%), whereas the untouched isolation was much more variable, yielding ~70% enrichment on average. These two enrichment methods were compared as it was thought that the presence of non-classical CD16hi monocytes in the untouched enrichment may mediate greater compromise than the classical CD14hi monocytes. This however, was not the case and these observations raise a number of important considerations pertaining to the enrichment strategy, which are essential for generating reliable and consistent data. Conclusions We conclude that IL-1β and TNFα differentially influence monocyte interaction with brain endothelial cells and moreover, the enrichment method also influences the monocyte response as revealed using ECIS technology.

When clinical care is like research: the need for review and consent

The prevailing “segregated model” for understanding clinical research sharply separates it from clinical care and subjects it to extensive regulations and guidelines. This approach is based on the fact that clinical research relies on procedures and methods—research biopsies, blinding, randomization, fixed treatment protocols, placebos—that pose risks and burdens to participants in order to collect data that might benefit all patients. Reliance on these methods raises the potential for exploitation and unfairness, and thus points to the need for independent ethical review and more extensive informed consent. In contrast, it is widely assumed that clinical care does not raise these ethical concerns because it is designed to promote the best interests of individual patients. The segregation of clinical research from clinical care has been largely effective at protecting research participants. At the same time, this approach ignores the fact that several aspects of standard clinical care, such as clinician training and scheduling, also pose some risks and burdens to present patients for the benefit of all patients. We argue that recently proposed learning health care systems offer a way to address this concern, and better protect patients, by developing integrated review and consent procedures. Specifically, current approaches base the need for independent ethical review and more extensive informed consent on whether an activity is categorized as clinical research or clinical care. An ethically sounder approach, which could be incorporated into learning health care systems, would be to base the need for independent ethical review and more extensive informed consent on the extent to which an activity poses risks to present patients for the benefit of all patients.

Optimizing the involvement of language interpreters during the clinical encounter.

Many clinicians attend to the needs of patients who do not speak the same language as they do. In the U.S., such patients are most likely to have limited English proficiency (LEP). Clinicians at medical centers with interpreters available either on staff or over-the-phone may wonder how to structure interpreter participation in the clinical conversation. There has been an explosion of literature on the provision of culturally competent medical care, and most everyone would agree that there is an association between race/ethnicity and health disparities, that language barriers contribute to these disparities, and that medical providers who encounter language barriers should request a professional interpreter. However, the nuances in how the involvement of an interpreter can be calibrated to a particular patient’s degree of proficiency, needs, and preferences remain under-explored. In particular, when deciding how to involve an interpreter, how should clinicians weigh the balance between under-reliance on the interpreter, failing to sufficiently involve an interpreter for patients whom the service could benefit, and over-reliance on the interpreter? The literature on language barriers overwhelmingly focuses on the drawbacks of interpreter under-reliance.1 In this Comment, we focus on the other side of the equation: possible harms of interpreter over-reliance. Our primary aim is to stimulate research exploring the benefits of more flexible interpreter involvement. In the meantime, we also provide guidance for clinicians on new approaches to conversations with LEP patients.