Ann Arbor, Mich. When a child is born with a disorder of sex development, decisions regarding gender assignment and genital surgery are often made quickly and under pressure.
Quite often those decisions are surgical and often irreversible. Former patients and health care advocates have long complained that parents are provided inadequate information to make decisions for their child with a disorder of sex development.
But with a new award from the Patient-Centered Outcomes Research Institute (PCORI), researchers at the University of Michigan hope to provide parents with the tools needed to make decisions about disorders of sex development (DSD).
"When a child with a disorder of sex development is born, parents are often experiencing enormous distress," says David E. Sandberg, Ph.D., director of the Division of Child Behavioral Health at C.S. Mott Children's Hospital and professor of pediatrics and communicable diseases at the University of Michigan Medical School.
"The right decisions about gender assignment -- is it a boy or a girl -- and the best course of action (for example should there be surgery? what kind? when?) are not obvious."
"Parents can make decisions that they think are in the best interest of the child that they will regret later."
DSD is a term that describes a wide range of diagnoses that affect the development of sex organs, whether due to chromosomes, hormones, or other factors.
Sandberg said despite significant progress, genetic diagnosis does not necessarily offer clear guidance for parents about gender assignment or best treatment. "It can open the door to additional uncertainties," he says.
Sandberg's project, which has a proposed budget of about $1.3 million, would create a decision-making aid that could be used in genetic counseling and test-result disclosure that would prepare parents to be fully involved in management or treatment plans for their children.
|Contact: Mary F. Masson|
University of Michigan Health System