The National Society of Genetic Counselors (NSGC) acknowledges the medical and ethical complexities of testing for adult-onset conditions during pregnancy. NSGC recommends pre-test genetic counseling, which should include a discussion of multiple factors such as the natural history of the condition (e.g. age of onset, penetrance, disease severity) as well as available treatments or interventions. The pregnant patient's decision to test and the care team’s decision to facilitate testing should be made in the context of potential harms such as limiting future autonomy, genetic discrimination, and limited or unknown clinical utility or validity (Revised October 2024; replaces 2019 version).
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