Disclosing Disorders of Sex Development and Opening the Doors

Abstract

This paper focuses on the importance of full disclosure in disorders of sex development (DSD), as a universal human right and closely related to informed consent. Full disclosure is not only a way of communicating a diagnosis, it is a methodological constant that permeates all the clinical moments expressed by a multidisciplinary team. As stated by The Chicago consensus, DSD should be referred to specialized centers of excellence. In these centers provided with the necessary multidisciplinary team that is able to: provide knowledge, skills and experience; deliver quality and care, and cope with the emotional barriers that often hinder the practice of full disclosure. Full disclosure is important when a person is informed about something, can participate in making a decision or is advised about something that needs to be done before he/she will be able to make a choice. However, if a person is informed about something that was done unnecessarily and could have been postponed until he/she could have been involved in making the decision, full disclosure can be seen as deception colored by rage, sorrow and regret.

Evaluation and treatment for ovotesticular disorder of sex development (OT-DSD) - experience based on a Chinese series

“…Ethicists and patient support groups advocated that the genital surgery should not be warranted until the patient was able to understand the informed consent, instead of repair in infancy period [9]. However, as the appearance of bisexsual phenotype and continuous anxiety of parents call for the management, it is rational and in a degree mandatory to initiate the evaluation at an early age.…”

Comment on “Complete Androgen Insensitivity Syndrome: Optimizing Diagnosis and Management”

“…Thus, delayed gonadal removal can be recommended to permit both full sexual development [15] and better bone health [16]. If diagnosis of CAIS is certain, surgery can be postponed—at least until the legal age at which the propositus can participate in decision making [1, 15, 17–19]. …”

“…We are concerned and in complete disagreement with the decision to perform gonadectomy without full disclosure and assent of the adolescent [17–19]. …”

Negotiating intersex: A case for revising the theory of social diagnosis

“…Still others want to create new categories that accommodate their variations without pigeonholing them into either one sex or another (Chau and Herring, 2002). Almost all want full disclosure from clinicians regarding assessments (Alderson et al, 2004)—a courtesy that sadly remains far from universal (D'Alberton, 2010). …”