(SACRAMENTO, Calif.) A shared decision-making process would assist doctors and parents who are facing the extraordinarily complex, challenging and controversial choices presented when infants are born with genetic or anatomical anomalies in sexual development and are being considered for elective corrective surgery, a new research paper suggests.
The paper does not address instances in which infants are born with conditions that pose an imminent threat to their health such as when children are born without a urinary opening. Instead, the paper is intended to propose guidelines for use when surgery is being considered to make a child's appearance more typical of their sex in order to facilitate their gender-identity development.
"Difficult Decisions: Disorders of Sex Development and Surgical Intervention" is published online in the August issue of the Journal of Pediatric Endocrinology and Metabolism. In it the researchers suggest that a six-step decision-making approach would afford health-care providers the opportunity to clarify the reasons for their recommendations, identify and fill gaps in parents' understanding of their child's diagnosis and treatment options, and explore the values underlying both parents' and clinicians' concerns.
"The big issue that we are addressing is that there is no standard approach or best practice for physicians and family members to follow to address decision making for infants who are born with disorders of sex development" or with atypical sexual development, said Alexander Kon, senior author of the study and associate professor of pediatrics and bioethics at the UC Davis School of Medicine.
Study first author Katrina Karzakis, a senior research scholar at the Center for Biomedical Ethics at Stanford University, agreed.
"There are a lot of gaps in evidence-based medicine regarding these types of procedures that aren't going to be filled any time soon," said Karzakis, who i
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University of California - Davis - Health System