Ethical Challenges in Diagnosis & Disclosure
The PSEEN Initiative aims to indentify and examine ethical and policy issues generated by rapidly advancing technoligies that will allow early detection and possibly prevention of psychosis spectrum disorders.
In partnership with the Neuropsychiatry Section in Penn's Department of Psychiatry, we will approach these issues along two research tracks: empirical bioethics and normative analysis.
Key problems to be addressed by this initiative will be to clarify the concept of prodromal psychosis and examine derivative ethical challenges, such as appropriate disclosure of risk information, mitigating stigma, and respecting the autonomy of adolescents as transitional decision makers.
The PSEEN Initiative is supported a grant from the Greenwall Foundation.
Psychosis Risk: What Is It and How Should We Talk About It?
Schizophrenia and other psychosis spectrum disorders do not develop de novo but emerge from prodromal stages that are named and operationalized differently depending on the research group or consortium and its theoretical orientation. As a result, a complex lexicon now exists for characterizing individuals’ risk of subclinical symptoms converting to psychosis. Researchers aim to develop instruments and methods to identify people at risk of psychosis, better understand their risks, and offer preventative treatments to arrest conversion to psychosis; ethical and policy questions loom large with each of these projects. In this paper, we canvass the lexical complexities of the at-risk status for psychosis and then consider ethical and policy challenges that researchers and clinicians face in disclosing, preventing, and treating psychosis risk.
Authors: Dominic Sisti, PhD & Monica Calkins, PhD
Exploring the Lived Experience of Individuals with a Psychosis Spectrum Disorder and their Families
This is an exploratory study seeking to develop a greater understanding of what thoughts, concerns, and perceptions contribute to the lived experience of individuals diagnosed with a psychosis spectrum disorder, their caregivers, and mental health service providers. Qualitative research methodology [freelisting] is used for eliciting information on what issues are of greatest concern to these populations regarding topics such as mental health treatment, participation in research, and expectations for the future. While data collection is ongoing, analysis will involve comparison of responses to the freelisting exercise across the three groups. The information obtained is intended to inform future follow-up studies and approaches to treatment and research among psychosis spectrum populations.
Researcher: Erich Dress, MBE, MPH (candidate), Clinical Research Coordinator, Neuropsychiatry Section, Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania
Supervisors: Dominic Sisti, PhD; Rosie Frasso, PhD, MSc; Raquel Gur, MD, PhD
The Relationship Between Symptom Severity, Illness Insight, and Attitudes towards Seeking Mental Health Care in Individuals with Prodromal Psychosis
Attenuated psychosis syndrome is a label that was added to the appendix of the DSM-5 as a condition for further study (Tsuang et al., 2013) that attempts to categorize individuals displaying symptoms such as delusions or hallucinations that are likely to develop into threshold psychosis. Attenuated psychosis syndrome is also referred to as prodromal psychosis, or being of clinical high risk. There has been a debate in recent years as to whether it is useful to label individuals exhibiting subthreshold symptoms such as delusions or hallucinations, as having attenuated psychosis syndrome. Whether or not, and how, to disclose the attenuated psychosis label to patients and their families is a critical concern. Proponents argue that early psychiatric treatment and increased social supports can help alter or arrest the disease course, while opponents claim prognostic uncertainty makes the risk of unnecessary medication and increased distress and stigma unjustifiable. This project seeks to begin to build an evidence base to meet the urgent need for ethical guidelines surrounding the disclosure of putatively prodromal psychosis.
Researcher: Andrea Segal, MS, MPH (candidate), Research Coordinator, The Scattergood Program for Applied Ethics in Behavioral Health Care.
Supervisors: Dominic Sisti, PhD; Rosie Frasso, PhD, MSc; Monica Calkins, PhD
Prodromal Psychosis: Ethical Challenges in Classification, Diagnosis, & Treatment
This workshop will provide an analysis of the key ethical issues related both to the research and treatment of presumptive risk states, including how to properly disclose and explain risk information, unique forms of stigma associated with at-risk states, and questions about appropriate preventative treatments. These issues are ultimately grounded in a key nosological question that continues to confound researchers: What are the precise boundaries of the psychosis prodrome?
In this workshop, we will describe philosophical, ethical, and empirical findings from our Prodromal Schizophrenia Empirical and Ethical Nexis (PSEEN) collaborative study at the University of Pennsylvania.
Speakers: Raquel Gur, Monica Calkins, Erich Dress, Andrea Segal, Dominic Sisti
Dominic Sisti, PhD, MBE, Assistant Professor of Medical Ethics; Director, The Scattergood Program for Applied Ethics in Behavioral Health Care; Department of Medical Ethics & Health Policy, Perelman School of Medicine, University of Pennsylvania
Research Personnel & Significant Contributors
Erich Dress, Clinical Research Coordinator, Neuropsychiatry Section, Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania.
Monica Calkins, PhD, Associate Professor of Psychology; Director, Clinical Research Assessment, Schizophrenia Research Center and Brain Behavior Laboratory, Department of Psychiatry, Neuropsychiatry Section, Perelman School of Medicine, University of Pennsylvania
Raquel Gur, MD, PhD, Professor of Psychiatry, Neurology and Radiology; Director, Neuropsychiatry Section and the Schizophrenia Research Center; Vice Chair of Research Development, Department of Psychiatry, University of Pennsylvania Perelman School of Medicine
Andrea Segal, MS, Research Coordinator, The Scattergood Program for Applied Ethics in Behavioral Health Care; Adjunct Instructor, The School of Social Policy and Practice, University of Pennsylvania