Research and Publications

Stites, Shana, et al.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”. Health Communication (2018). Web. Publisher's VersionAbstract
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.
Conley, Dalton, et al.A sibling method for identifying vQTLs”. PloS One 13.4 (2018). Web. Publisher's VersionAbstract
The propensity of a trait to vary within a population may have evolutionary, ecological, or clinical significance. In the present study we deploy sibling models to offer a novel and unbiased way to ascertain loci associated with the extent to which phenotypes vary (variance-controlling quantitative trait loci, or vQTLs). Previous methods for vQTL-mapping either exclude genetically related individuals or treat genetic relatedness among individuals as a complicating factor addressed by adjusting estimates for non-independence in phenotypes. The present method uses genetic relatedness as a tool to obtain unbiased estimates of variance effects rather than as a nuisance. The family-based approach, which utilizes random variation between siblings in minor allele counts at a locus, also allows controls for parental genotype, mean effects, and non-linear (dominance) effects that may spuriously appear to generate variation. Simulations show that the approach performs equally well as two existing methods (squared Z-score and DGLM) in controlling type I error rates when there is no unobserved confounding, and performs significantly better than these methods in the presence of small degrees of confounding. Using height and BMI as empirical applications, we investigate SNPs that alter within-family variation in height and BMI, as well as pathways that appear to be enriched. One significant SNP for BMI variability, in the MAST4 gene, replicated. Pathway analysis revealed one gene set, encoding members of several signaling pathways related to gap junction function, which appears significantly enriched for associations with within-family height variation in both datasets (while not enriched in analysis of mean levels). We recommend approximating laboratory random assignment of genotype using family data and more careful attention to the possible conflation of mean and variance effects.
Sisti, Dominic, et al.Diagnosing, Disclosing, and Documenting Borderline Personality Disorder: A Survey of Psychiatrists' Practices”. Journal of Personality Disorders (2016). Web. Publisher's VersionAbstract
Borderline personality disorder (BPD) is a valid and reliable diagnosis with effective treatments. However, data suggest many patients remain unaware they carry the diagnosis, even when they are actively engaged in outpatient psychiatric treatment. The authors conducted a survey of 134 psychiatrists practicing in the United States to examine whether they had ever withheld and/or not documented their patients' BPD diagnosis. Fifty-seven percent indicated that at some point during their career they failed to disclose BPD; 37 percent said they had not documented the diagnosis. For those respondents with a history of not disclosing or documenting BPD, most agreed that either stigma or uncertainty of diagnosis played a role in their decisions. The findings highlight the need for clinical training programs to address these issues. The research also invites further research to identify other reasons why psychiatrists are hesitant to be fully open about the diagnosis of BPD.
Johnson, Rebecca, et al.Risks of phase I research with healthy participants: A systematic review”. Clinical Trials 13.2 (2016): , 13, 2, 149-160. Web. Publisher's VersionAbstract

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. The present paper 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 through 1 October 2012). Inclusion criteria were phase I studies that enrolled healthy participants of any age, provided quantitative adverse event (AE) data, and documented the number of participants enrolled. Exclusion criteria included 1) AE data not in English, 2) a “challenge” study in which participants were administered a pathogen, and 3) no quantitative information about serious AE’s. Data on the incidence of adverse events, duration of AE 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/AE monitoring day (interquartile range, 17.80 – 77.19). Conclusions: 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.

Johnson, Rebecca, and Jason Karlawish. “A review of ethical issues in dementia”. International Psychogeriatrics 27.10 (2015): , 27, 10, 1635-1647. Web. Publisher's VersionAbstract
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 dementia's 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 dementia's 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 Alzheimer's 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 employer's right to a safe and productive workforce with an employee's rights to avoid discrimination on the basis of their dementia risk. The review highlights these themes and emerging ethical issues in dementia.
Johnson, Rebecca, et al.The relative contributions of disease label and disease prognosis to Alzheimer's stigma: A vignette-based experiment”. Social Science and Medicine 143 (2015): , 143, 117-127. Web. Publisher's VersionAbstract
Background: The classification of Alzheimer's disease is undergoing a significant transformation. Researchers have created the category of “preclinical Alzheimer's,” characterized by biomarker pathology rather than observable symptoms. Diagnosis and treatment at this stage could allow preventing Alzheimer's cognitive decline. While many commentators have worried that persons given a preclinical Alzheimer's label will be subject to stigma, little research exists to inform whether the stigma attached to the label of clinical Alzheimer's will extend to a preclinical disorder that has the label of “Alzheimer's” but lacks the symptoms or expected prognosis of the clinical form. Research questions: The present study sought to correct this gap by examining the foundations of stigma directed at Alzheimer's. It asked: do people form stigmatizing reactions to the label “Alzheimer's disease” itself or to the condition's observable impairments? How does the condition's prognosis modify these reactions?. Methods: Data were collected through a web-based experiment with N = 789 adult members of the U.S. general population (median age = 49, interquartile range, 32–60, range = 18–90). Participants were randomized through a 3 × 3 design to read one of 9 vignettes depicting signs and symptoms of mild stage dementia that varied the disease label (“Alzheimer's” vs. “traumatic brain injury” vs. no label) and prognosis (improve vs. static vs. worsen symptoms). Four stigma outcomes were assessed: discrimination, negative cognitive attributions, negative emotions, and social distance. Results: The study found that the Alzheimer's disease label was generally not associated with more stigmatizing reactions. In contrast, expecting the symptoms to get worse, regardless of which disease label those symptoms received, resulted in higher levels of perceived structural discrimination, higher pity, and greater social distance. Conclusion: These findings suggest that stigma surrounding pre-clinical Alzheimer's categories will depend highly on the expected prognosis attached to the label. They also highlight the need for models of Alzheimer's-directed stigma that incorporate attributions about the condition's mutability.
Johnson, Rebecca, Chris Hafner-Eaton, and Marion Danis. “U.S. state variation in autism insurance mandates: Balancing access and fairness”. Autism (Autism and Society special issue) 18.7 (2014): , 18, 7, 803-814. Web. Publisher's VersionAbstract
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.
Johnson, Rebecca, Govind Persad, and Dominic Sisti. “The Tarasoff rule: the implications of interstate variation and gaps in professional training”. Journal of American Academy of Psychiatry and the Law 42.4 (2014): , 42, 4, 469-477. Web. Publisher's VersionAbstract

Recent events have revived questions about the circumstances that ought to trigger therapists' duty to warn or protect. There is extensive interstate variation in duty to warn or protect statutes enacted and rulings made in the wake of the California Tarasoff ruling. These duties may be codified in legislative statutes, established in common law through court rulings, or remain unspecified. Furthermore, the duty to warn or protect is not only variable between states but also has been dynamic across time. In this article, we review the implications of this variability and dynamism, focusing on three sets of questions: first, what legal and ethics-related challenges do therapists in each of the three broad categories of states (states that mandate therapists to warn or protect, states that permit therapists to breach confidentiality for warnings but have no mandate, and states that give no guidance) face in handling threats of violence? Second, what training do therapists and other professionals involved in handling violent threats receive, and is this training adequate for the task that these professionals are charged with? Third, how have recent court cases changed the scope of the duty? We conclude by pointing to gaps in the empirical and conceptual scholarship surrounding the duty to warn or protect.


Yeager, David, et al.The far-reaching effects of believing people can change: Implicit theories of personality shape stress, health, and achievement during adolescence”. Journal of Personality and Social Psychology 106.6 (2014): , 106, 6, 867-884. Web. Publisher's VersionAbstract
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.