Anencephaly: Insights for Genetic Counseling

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