title: Ethical, Legal, and Clinical Considerations when Disclosing a High-Risk Syndrome for Psychosis.
abstract: There are complex considerations when planning to disclose an attenuated psychosis syndrome (APS) diagnosis. In this review, we evaluate ethical, legal, and clinical perspectives as well as caveats related to full, non- and partial disclosure strategies, discuss societal implications, and provide clinical suggestions. Each of the disclosure strategies is associated with benefits as well as costs/considerations. Full disclosure promotes autonomy, allows for the clearest psychoeducation about additional risk factors, helps to clarify and/or correct previous diagnoses/treatments, facilitates early intervention and bolsters communication between providers but there are important considerations involving heritability, comorbidity, culture, and stigma. Non-disclosure advances nonmaleficence by limiting stigma and stress (which may inadvertently exacerbate the condition), and confusion (related to the rapidly evolving diagnosis) in a sensitive developmental period but is complicated by varying patient preferences and the possibility that, as new treatments without adverse effects become available, the risk with false positives no longer justifies the accompanying loss of autonomy. Partial disclosure balances ethical considerations by focusing on symptoms instead of labels, but evidence that laypersons may interpret this information as a pseudo-diagnosis and that symptoms alone also contribute to stigma limits the efficacy of this approach. In addition, there are notable societal considerations relating to disclosure involving conservatorship, the reach of insurance companies, and discrimination. We advocate a hybrid approach to disclosure and recommend future research aimed at understanding the effects of stigma on clinical course and a renewed focus on those help-seeking cases that do not transition but remain clinically relevant.
authors.forename: Vijay A
authors.initials: VA
authors.lastname: Mittal
authors.forename: Derek J
authors.initials: DJ
authors.lastname: Dean
authors.forename: Jyoti
authors.initials: J
authors.lastname: Mittal
authors.forename: Elyn R
authors.initials: ER
authors.lastname: Saks
mesh_terms: D000293:Adolescent; D000294:Adolescent Behavior; D041923:Adolescent Development; D026686:Beneficence; D015897:Comorbidity; D003466:Cultural Characteristics; D030881:Disclosure / Q000941:ethics / Q000331:legislation & jurisprudence*; D040941:Heredity; D006801:Humans; D019458:Insurance Coverage; D007348:Insurance, Health; D026706:Paternalism; D010353:Patient Education as Topic; D057240:Patient Preference; D026684:Personal Autonomy; D011618:Psychotic Disorders / Q000175:diagnosis / Q000517:prevention & control / Q000523:psychology / Q000628:therapy; D012307:Risk Factors; D012649:Self Concept; D063508:Social Discrimination; D057545:Social Stigma; D013315:Stress, Psychological / Q000517:prevention & control*; D014342:Truth Disclosure / Q000941:ethics*
keywords: diagnosis; disclosure; prodrome; psychosis; schizophrenia; ultra high-risk