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Anencephaly: Insights for Genetic Counseling
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Anencephaly: Insights for Genetic Counseling
Anencephaly: Insights for Genetic Counseling
Journal Article

Anencephaly: Insights for Genetic Counseling

2019
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Overview
Genetic counselors may meet with expectant parents to facilitate decision making following prenatal diagnosis of anencephaly. Factors that contribute to pregnancy management decisions and the perceived helpfulness of genetic counseling in this patient population are not fully understood. Women and their male partners who previously received a prenatal diagnosis of anencephaly completed mixed-methods questionnaires to assess decision-making factors and the impact of genetic counseling. Lethality of the anomaly and religious and ethical views factored most into pregnancy management decisions. Over half of participants met with a genetic counselor; however nearly one-third did not find the meeting helpful. Genetic counselors may need to prioritize psychosocial support and provision of resources to meet the needs of expectant couples receiving a prenatal diagnosis of anencephaly.