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.

1.
Brinkmann L, Schutzmann K, Richter-Appelt H: Gender assignment and medical history of individuals with different forms of intersexuality: evaluation of medical records and the patients’ perspective. J Sex Med 4:964–980 (2007).
2.
Carmichael P, Ransley PG: Telling children about a physical intersex condition. Dialogues Pediatr Urol 25:7–8 (2002).
3.
Creighton S, Minto CL: Managing intersex. BMJ 323:1264–1265 (2001).
4.
Creighton S, Minto CL, Steele SJ: Objective cosmetic and anatomical outcomes at adolescence of feminising surgery for ambiguous genitalia done in childhood. Lancet 358:124–125 (2001).
5.
Hughes A, Houk C, Ahamed SF, Lee PA; LWPES/ESPE Consensus Group: Consensus statement on managing of intersex disorders. Arch Dis Child 91:554–563 (2006).
6.
Kanzakis K: Fixing Sex: Intersex, Medical Authority and Lived Experience. (Duke University Press, Durham and London 2008).
7.
Liao LM: Learning to assist women born with atipic genitalia: journey through ignorance, taboo and dilemma. J Reprod Infant Psyc 21:229–238 (2003).
8.
Liao LM, Green H, Creighton SM, Crouch NS, Conway GS: Patient experiences of obtaining and giving information about disorder of sex development. BJOG-Int J Obstet Gy 117:193–199 (2010).
9.
Menzies IE: A case in the functioning of social systems as a defence against anxiety: a report on a study of the nursing service of a general hospital. Hum Relat 13:95–121 (1960).
10.
Money J, Hampson JG, Hampson JL: Hermaphroditism. Recommendations concerning assignment of sex, change of sex and psychological management. Bull Johns Hopkins Hosp 97:284–300 (1955).
11.
Slijper FM, Frets PG, Boehmer AL, Drop SL, Niermeijer MF: Androgen insensitivity syndrome (AIS) emotional reactions of parents and adult patients to the clinical diagnosis of AIS and its confirmation by androgen receptor gene mutation analysis. Horm Res 53:9–15 (2000).
12.
Sutton A: ‘Lesley’: the struggle of a teenager with an intersex disorder to find an identity – its impact on the ‘I’ of the beholder, in Di Ceglie D, Freeman D (eds): A Stranger in My Own Body – Atypical Gender Identity Development and Mental Health (Karnac Books, London 1998).
13.
Wisniewski AB, Migeon CJ, Heino FL, Meyer-Bahlburg JP, Berkovitz GD, et al: Complete androgen insensitivity syndrome: long-term medical, surgical and psychosexual outcome. J Clin Endocrinol Metab 85:2664–2669 (2000).
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