Ethical principles and recommendations for the medical management of differences of sex development (DSD)/intersex in children and adolescents

The medical management of differences of sex development (DSD)/intersex in early childhood has been criticized by patients’ advocates as well as bioethicists from an ethical point of view. Some call for a moratorium of any feminizing or masculinizing operations before the age of consent except for medical emergencies. No exhaustive ethical guidelines have been published until now. In particular, the role of the parents as legal representatives of the child is controversial. In the article, we develop, discuss, and present ethical principles and recommendations for the medical management of intersex/DSD in children and adolescents. We specify three basic ethical principles that have to be respected and substantiate them. The article includes a critical discussion of the best interest of the child and of family privacy. The argumentation draws upon recommendations by the working group “Bioethics and Intersex” within the German Network DSD/Intersex, which are presented in detail. Unlike other recommendations with regard to intersex, these guidelines represent a comprehensive view of the perspectives of clinicians, patients, and their families

Parent perceptions of early prognostic encounters following children’s severe traumatic brain injury: ‘Locked up in this cage of absolute horror’

OBJECTIVE: Little guidance exists for discussing prognosis in early acute care with parents following children’s severe traumatic brain injury (TBI). Providers’ beliefs about truth-telling can shape what is said, how it is said, and how providers respond to parents. METHODS: This study was part of a large qualitative study conducted in the USA (42 parents/37 families) following children’s moderate to severe TBI (2005 to 2007). Ethnography of speaking was used to analyse interviews describing early acute care following children’s severe TBI (29 parents/25 families). RESULTS: Parents perceived that: a) parents were disadvantaged by provider delivery; b) negative outcome values dominated some provider’s talk; c) truth-telling involves providers acknowledging all possibilities; d) framing the child’s prognosis with negative medical certainty when there is some uncertainty could damage parent-provider relationships; e) parents needed to remain optimistic; and, f) children’s outcomes could differ from providers’ early acute care prognostications. CONCLUSION: Parents blatantly and tacitly revealed their beliefs that providers play an important role in shaping parent reception of and synthesis of prognostic information, which constructs the family’s ability to cope and participate in shared decision-making. Negative medical certainty created a fearful or threatening environment that kept parents from being fully informed