Disorders (or differences) of sex development are congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical; they comprise a spectrum of medical conditions affecting ~1% of the population and are associated with increased risk to physical health and well-being across the lifespan. For every person with a newly identified DSD, there may be multiple clinical management options to consider (e.g., gender of rearing, surgical intervention, extent of genetic testing). Clinical management in DSD is in a state of flux with disagreements within and between healthcare specialties, advocacy, and patient communities regarding what constitutes optimal care. Implementation of bioethical principles in healthcare is predicated on a doctor-patient relationship in which the patient is competent to engage in shared decision-making (SDM) and is provided with balanced information regarding risks and benefits of all available clinical management options. Pediatric decision-making, in particular involving young children, presents the challenge of determining how best to balance parent rights in determining what is in the child?s ?best interests? with the child?s right to bodily autonomy and self- determination.
An aim of the parent R01 is curriculum development intended to sensitize providers to tension between varying stakeholder group values and priorities (in particular, children and their parents) in the SDM process. The parent R01 concludes without establishing a roadmap for SDM that accounts for differential valuing of healthcare processes and outcomes according to stakeholder group (provider, parent, patient). SDM, informed consent, assent, and permission reflect foundational pillars of bioethics, yet these constructs do not automatically inform processes by which they can reliably be achieved. We therefore propose to employ user- centered design principles to create a series of patient decision aids (PtDAs) that address the key index decisions faced by parents of young children with DSD and which meet certification standards of the International Patient Decision Aid Standards (IPDAS) Collaboration. At present, the opportunity for providers and parents to share in clinical decision-making processes for infants and young children with DSD is being challenged in the courts and several state legislatures with calls for a moratorium on any elective genital surgery. The significance of this supplement rests in its objective to translate evidence regarding overlapping and distinct stakeholder perspectives regarding optimal care into a series of PtDAs that ensure decisions by parents are informed, more likely to be aligned with family values and associated with reduced risk of decisional regret. This approach holds the promise of providing an ethical alternative to universal legislative strictures on the practice of medicine.
Medical decision making for elective procedures in young children born with a disorder (or difference) of sex development raises significant bioethical challenges. This aim of this supplement is to translate evidence from parent grant research regarding overlapping and distinct stakeholder perspectives regarding optimal care into a series of PtDAs that ensure decisions by parents are informed, more likely to be aligned with family values and associated with reduced risk of decisional regret. This evidence and ethically-based alternative to universal legislative strictures on parent decision making and the practice of medicine expands policy options.
