title: Genital surgery for disorders of sex development: implementing a shared decision-making approach.
abstract: Ongoing controversy surrounds early genital surgery for children with disorders of sex development, making decisions about these procedures extraordinarily complex. Professional organizations have encouraged healthcare providers to adopt shared decision-making due to its broad potential to improve the decision-making process, perhaps most so when data are lacking, when there is no clear "best-choice" treatment, when decisions involve more than one choice, where each choice has both advantages and disadvantages, and where the ranking of options depends heavily on the decision-maker's values. We present a 6-step model for shared decision-making in decisions about genital surgery for disorders of sex development: (1) Set the stage and develop an appropriate team; (2) Establish preferences for information and roles in decision-making; (3) Perceive and address emotions; (4) Define concerns and values; (5) Identify options and present evidence; and (6) Share responsibility for making a decision. As long as controversy persists regarding surgery for DSD, an SDM process can facilitate the increased sharing of relevant information essential for making important health care decisions.
authors.affiliation: Center for Biomedical Ethics, Stanford University, Palo Alto, CA, USA. karkazis@stanford.edu
authors.forename: Katrina
authors.initials: K
authors.lastname: Karkazis
authors.forename: Anne
authors.initials: A
authors.lastname: Tamar-Mattis
authors.forename: Alexander A
authors.initials: AA
authors.lastname: Kon
mesh_terms: D001291:Attitude of Health Personnel; D003657:Decision Making; D003661:Decision Support Techniques; D012734:Disorders of Sex Development / Q000175:diagnosis / Q000523:psychology / Q000601:surgery*; D005260:Female; D005835:Genitalia / Q000473:pathology / Q000601:surgery*; D006282:Health Personnel; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010290:Parents; D010358:Patient Participation; D011379:Prognosis