Prenatal hemoglobinopathy screening. IV : Follow-up of women at risk for a child with a clinically significant hemoglobinopathy

To determine the benefits and burdens of prenatal hemoglobinopathy carrier identification and genetic counseling and its impact on subsequent reproductive behavior, we recontacted women whom we had previously identified as at risk for having a child with a clinically significant hemoglobinopathy, re...

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Bibliographic Details
Published in:American journal of human genetics 1991-12, Vol.49 (6), p.1292-1299
Main Authors: LOADER, S, SUTERA, C. J, SEGELMAN, S. G, KOZYRA, A, ROWLEY, P. T
Format: Article
Language:English
Subjects:
Adolescent
Adult
Attitude to Health
Biological and medical sciences
Decision Making
Female
Follow-Up Studies
Genetic Counseling
Hemoglobinopathies - diagnosis
Hemoglobinopathies - genetics
Hemoglobinopathies - psychology
Humans
Interviews as Topic
Medical genetics
Medical sciences
Patient Satisfaction
Pregnancy
Prenatal Diagnosis
Reproducibility of Results
Risk Factors
Sexual Behavior
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Summary:To determine the benefits and burdens of prenatal hemoglobinopathy carrier identification and genetic counseling and its impact on subsequent reproductive behavior, we recontacted women whom we had previously identified as at risk for having a child with a clinically significant hemoglobinopathy, regardless of whether they had accepted the offer of prenatal diagnosis. Of the 46 such women, 31 were available for interview. These 31 women had received offers of prenatal diagnosis in 47 pregnancies. Seventeen had been accepted, and 30 had been declined. The proportion of patients accepting the offer of prenatal diagnosis was higher for the index pregnancy (50%) than for subsequent pregnancies (22%). The mean interval between the initial counseling of the patient and the follow-up interview was 43 mo (standard error +/- 2.7 mo). Ninety-four percent of those interviewed recalled having received information from the screening program; 74% recalled the name of their condition; 90% knew that trait did not affect their health; 84% recalled the name of the condition for which their fetus had been at risk; and 77% could state at least one symptom of the disease. Of the 29 women asked whether they intended to use prenatal diagnosis in future pregnancies, 13 said yes and 16 said no. Of the 26 patients asked about satisfaction with their previous decision about prenatal diagnosis, all were satisfied with their decision. Eighteen said they would make the same decision in their next pregnancy, but seven patients said they would not, and one was undecided.
ISSN:0002-9297
1537-6605