F1000 Commentary: Disorders of sex development-when and how to tell the patient

Austin J, Tamar-Mattis A, Mazur T, Henwood MJ, Rossi WC. Pediatr Endocrinol Rev. 2011;8:213-7


Physicians and other providers are often confronted with difficult decisions in the area of disclosure. This article examines a hypothetical situation relevant to the practice of pediatric endocrinology. The parents of a child with a disorder of sex development (DSD) wish the physician to treat their child, but without revealing key medical information to the child. Herein, we will explore the legal and ethical responsibilities of a provider to disclose information to an under-age DSD patient and to provide insight on when and how to tell the patient.

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This article raises the important issue of how healthcare providers should manage the situation in which the parents of a child with a disorder of sex development (DSD) {1} do not want the provider to inform the patient regarding details of the diagnosis. Factors influencing providers’ response to this conflict are discussed. The potential for harm caused by secrecy is emphasized.

While the topic that this article discusses commonly emerges in the clinical management of DSDs, the article does not offer suggestions that are not already highlighted in the Consensus Statement on the Management of Intersex Disorders {1}. The recommendations are general and the reader may, therefore, not be satisfied after reading it that they are any better equipped to address issues of disclosure versus secrecy in the clinical setting. This article is helpful, nonetheless, in emphasizing that the inclination to withhold information from the child occurs in other medical conditions (e.g. pediatric cancer and HIV). What is needed (and missing in this paper) are general ‘scripts’ that could be tailored to the circumstances of the particular child and family. The Consensus Statement recommends that “The process of disclosure concerning facts about karyotype, gonadal status, and prospects for future fertility is a collaborative, ongoing action that requires a flexible individual-based approach. It should be planned with the parents from the time of diagnosis.” Nevertheless, the document later states that “… studies are needed to evaluate the effectiveness of information management with regard to timing and content.”

Improvements in this area would be facilitated by guidelines implemented in other areas and adapted to DSDs. For example, the authors of this paper suggest that clinicians consider the Guidelines for Comprehensive Sexuality Education {2} as a framework for the developmentally appropriate education of children about sex development and sexuality. One strategy to facilitate open communication within the family is to provide parents of a DSD-affected child with educational material soon after ascertainment of the DSD. The material would ideally include information on why parents might want to counter the understandable impulse to keep the diagnosis a secret and how there is evidence to support the advantages of children learning of their diagnoses at a young age. Such evidence can be taken from data on disclosure of other chronic disorders. The handout should also emphasize the importance of parental acceptance and comfort with the diagnosis as a part of the information-sharing process. Handbooks for clinicians and families which describe these principles have been published {3,4} and were described in the Consensus Statement as outlining ‘optimal’ care in DSDs.


1.  Consensus statement on management of intersex disorders. International Consensus Conference on Intersex. Lee PA, Houk CP, Ahmed SF, Hughes IA, International Consensus Conference on Intersex organized by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology Pediatrics 2006 Aug; 2(118):e488-500
PMID: 16882788
2.  Guidelines for Comprehensive Sexuality Education: Kindergarten through 12th Grade, Third edition. National Guidelines Task Force Sexuality Information and Education Council of the United States, 2004 Guidelines (Accessed 01 Dec 2011)
3.  Handbook for Parents. Consortium on the Management of Disorders of Sex Development Sexuality Information and Education Council of the United States, 2004 Guidelines (Accessed 01 Dec 2011)
4.  Clinical Guidelines for the Management of Disorders of Sex Development in Childhood. Consortium on the Management of Disorders of Sex Development Accord Alliance, 2006 Guidelines (Accessed 01 Dec 2011)


David E Sandberg serves on the Advisory Board of Accord Alliance, which distributes the “Handbook for Parents” cited in {3} and the “Clinical Guidelines for the Management of Disorders of Sex Development in Childhood.” cited in {4}.

Recommendation Citation

Sandberg D, Rau J and Mendelowitz E: F1000Prime Recommendation of [Austin J et al., Pediatr Endocrinol Rev2011, 8:213-7]. In F1000Prime, 12 Dec 2011; DOI: 10.3410/f.13398997.14768117. F1000Prime.com/13398997#eval14768117

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