From Principles to Process in Disorders of Sex Development Care

the DSD consensus [2] – that makes possible such good decision-making remains elusive. Further, providers caring for patients with these rare conditions, at least in North America, are not contributing to patient registries that collect the evidence needed for meaningful informed consent. They do not engage qualified psychosocial clinical professionals who can help families manage the ongoing challenges of life outside the hospital. They do not have systems in which parents’ distress, confusion, and need for extensive education are addressed, slowly and deliberately and repetitively enough to achieve true shared decision-making regarding surgeries, hormone treatments, and follow-up care. The authors have opted to ignore the existing DSD ethics literature in an effort to arrive at principles putatively unburdened by previous ethical engagement. They used a dialogue between an ethicist and two clinicians to articulate their proposed principles. We find this strange; it is hard to imagine a surgery article that explicitly ignores the surgical literature. And yet the authors unwittingly suggest a model of how parents might be similarly engaged, slowly and deliberately, in dialogue with a dedicated DSD team member – perhaps a specialized psychologist, genetic counselor, or DSD-knowledgeable clinical ethicist – to arrive organically at a similar understanding of what really matters: the long-term well-being In the article ‘Ethical principles for the management of infants with disorders of sex development’, Gillam, Hewitt, and Warne articulate six principles for the care of children with disorders of sex development (DSD) [1] . These principles strike us as good and reasonable, and indeed those with which many clinicians are already concerned, as is evident from the 2006 consensus of the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology [2] . Indeed, these are essentially the principles on which ethicists and patient advocates have been insisting for years [3, 4] . This article seems largely to be responding to the major DSD debate of a decade ago, namely over genital surgeries in infancy. Many have now recognized that the central challenge in DSD care is not centered on the surgeries per se, but rather finding a way to help families (and healthcare professionals) overcome the shame and anxious secrecy that may shape minds and force hands in ways that ultimately harm all involved. The challenge now is not articulation of principles; the challenge is creating a process for implementation. The authors appear to assume ‘that conditions for good ethical decision-making [...] are already in place’. And yet the environment for shared decision making [5] – the highly integrated, interdisciplinary healthcare team that includes behavioral health services called for in Received: May 31, 2010 Accepted: June 8, 2010 Published online: December 15, 2010 HORMONE RESEARCH IN PÆDIATRICS