Emotionally and cognitively informed consent for clinical care for differences of sex development

Clinicians who utilise recommended best practices for informed consent may be surprised that families in support groups frequently report that some physicians continue to recommend certain irreversible treatments for children with differences of sex development (DSD) without adequate psychosocial support for cognitive processing of information necessary to decision-making. Such practice is contrary to recommendations in the 2006 Consensus Statement on Management of Intersex Disorders. When psychological preparation is lacking for aspects of DSD such as uncertainty about future gender identity, a false sense of urgency can propel parents to agree to genital surgery or removal of gonads without adequate understanding of the long-term consequences in adulthood. If physicians are uncomfortable discussing gender and sexual issues, they may not explore the feasibility of, or offer support for, alternative approaches towards sex atypicality. Families may draw unrealistic conclusions regarding the extent to which such interventions will relieve their distress and improve quality of life for the child and family. Failing to offer adequate psychosocial support to parents making irreversible decisions about DSD can raise significant ethical and legal concerns. Families may experience regret and anger when they make decisions on the basis of limited or even biased information while in an emotionally vulnerable state. Children's autonomy is violated when they are completely excluded from decision-making. We propose adoption of a holistic approach to emotionally and cognitively informed consent in this setting, with inclusion of psychosocial and peer support from the earliest stages.