Social aspects of medical labels
The Relative Contributions of Disease Label and Disease Prognosis to Alzheimer's Stigma: A Vignette-based Experiment
Social Science and Medicine (with Kristin Harkins, Mark Cary, Pamela Sankar, and Jason Karlawish)
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.
The intersection of disease advocacy and disease policy:
U.S. State Variation in Autism Insurance Mandates: Balancing Access and Fairness
Autism (Autism and Society special issue). Online first. (with Marion Danis and Chris Hafner-Eaton)
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.
The Ethical Boundaries of Patient and Advocate Influence on DSM-5.
Harvard Review of Psychiatry 21(6): 334-44. (with Dominic Sisti and Marna Barrett)
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.
The Tarasoff Rule: The Implications of Inter-State Variation & Gaps in Professional Training.
Journal of the American Academy of Psychiatry and the Law(accepted)(with Dominic Sisti and Govind Persad).
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 have 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 research surrounding the duty to warn or protect.
Representation and Revision: The Controversial Case of DSM-5
Public Affairs Quarterly (special issue on moral and political implications of the DSM-5)(accepted)(2nd author respective to Dominic Sisti).
After over a decade in development, the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5) was published in May 2013. Throughout the revision process, critics argued that the task force, study groups, and work groups charged with revising the DSM should have been more inclusive. For instance, some have proposed including stakeholders like clinical psychologists, epidemiologists, lawyers, medical ethicists, patients, and family members. The controversies surrounding the DSM revisions prompt questions about the legitimacy of the DSM revision process and the diagnostic categories that result. Previous analyses have focused on the legitimacy of the products of DSM revisions, analyzing whether the categories capture symptoms that ought to be considered a disease. In this paper, we draw on several theories of political representation to examine the legitimacy of the DSM revision process itself. We highlight five models of representation that may increase the legitimacy of the DSM—substantive representation, symbolic representation, formal representation, descriptive representation, and participatory representation—and show how each applies to the DSM revision process. We then outline and respond to anticipated objections about the use of these models vis-à-vis the DSM. Concluding, we discuss some policy and procedural implications of our analysis and outline a set of recommendations for improving the DSM revision process.
Views about responsibility for alcohol addiction and negative evaluations of naltrexone
Substance Abuse Treatment, Prevention, and Policy 10: 10. (with Jonathan Lukens, Jonathan Kole, and Dominic Sisti).
Background: Moral 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.
Methods: Using 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.
Results: We 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.
Conclusions: We 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.
Cultural health capital and physician-patient interactions:
Optimizing the Involvement of Language Interpreters during the Clinical Encounter.
Journal of General Internal Medicine (with Lisa Block and Marion Danis)
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.
Markets and morality
“Challenging the Sanctity of ‘Donorism’: Tissue Providers as Payment-worthy Contributors.”
Kennedy Institute of Ethics Journal (accepted)(with David Wendler).
Many research projects rely on human biological materials. Some of these projects generate revenue. Recently, some commentators have argued that investigators have a moral claim to share in the revenue generated by research projects to which they contribute, whereas persons who provide the tissue used in the research projects have no such claim (Truog, Kesselheim, and Joffe 2012). In this paper, we critically analyze this view and offer a positive proposal for why tissue providers have a moral claim to benefit. Focusing on payment as a form of benefit, we argue that research is a joint project and propose a contribution principle for paying participants in those joint projects. We distinguish between contributions that shape a project’s revenue generating properties, grounding a claim to payment, and contributions that fail to ground such a claim. We conclude, contrary to existing arguments and practices, that some tissue providers have a moral claim to payment beyond compensation for risk and burden. This conclusion suggests that investigators, institutions, and sponsors should reconsider the fairness of their current practices.
“From Altruists to Workers: What Claims Should Healthy Participants in Phase I Trials have against Trial Employers.”
Ethics in Clinical and Translational Research: From Theory to Practice, from Practice to Theory (edited volume, forthcoming)
Phase I trials, which test the safety and toxicity of an investigational agent, are a vital stage of drug development. Many of these trials enroll healthy participants and recent data suggest that some of the healthy participants treat phase I research participation as a form of work. This chapter examines three facets of the shift from research participation as a form of altruism to research participation as a form of work. First, I outline features of trial participation that support labeling healthy participants’ enrollment in phase I research as a form of work according to three different conceptions: an earnings-based conception, time-based conception, and meanings-based conception of work. Second, I ask: is phase I research participation similar to risky occupations such as firefighting or coal mining, or is phase I research participation similar to non-risky, low-wage occupations such as janitorial work? To answer this question, I draw upon original data from a systematic review of 475 phase I trials with healthy participants that measures the risk level of the trials. Third, once I have found the appropriate “occupational bucket” for phase I work, I briefly examine the implications for two contested questions within research ethics: appropriate compensation for phase I participants and efforts to increase the transparency of trial results. I argue that conceiving of phase I research as a form of work can bolster the rights of research participants in some of these areas and that bioethicists ought to be less wary of this shift in research participants’ roles.
"Risks of Phase I Research with Healthy Participants: A Systematic Review."
Clinical Trials (with Annette Rid, Ezekiel Emanuel, and David Wendler)
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.
The Role of Future Work Goal Motives in Adolescent Identity Development: A Longitudinal Mixed-Methods Investigation.
Contemporary Educational Psychology 37 (3): 206-17(3rd author respective to David Yeager and Matthew Bundick).
Theories of adolescent identity development often emphasize the importance of adolescents’ future work goals, yet these theories rarely distinguish the self-oriented motives (enjoying or being a good fit for one’s work) from the beyond-the-self-oriented motives (having a positive impact on the world beyond the self) that underlie them. The present article explored the impact and development of both types of motives. Using longitudinal, mixed-methods data from middle school and high school students (N = 99), the present article found that: (1) adolescents generated both self-oriented and beyond-the-self-oriented motives for their future work goals, often simultaneously; (2) adolescents who held both self-oriented and beyond-the-self-oriented motives for their work goals were more likely to experience higher levels of purpose and meaning over a 2-year period than those who held neither; (3) school assignments that asked students to reflect on their work goals were positively related only to the development of self-oriented motives for work goals among middle school students; and (4) support from friends was positively related only to the development of self-oriented motives for work goals among high school students.
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): 867-84 (2nd author, full list: David Yeager, Rebecca Johnson, Brian Spitzer, Kali Trzesniewski, Joseph Powers, and Carol Dweck).
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