This study will examine the impact of genetic counseling on decisions made regarding reproductive options in women who are known to be at risk for producing an infant with a clinically significant hemoglobinopathy. While the literature shows that genetic counseling is very helpful in providing individuals or families with information to make informed decisions regarding reproductive decisions, professional opinions differ on the optimal time period to initiate genetic counseling. the purpose of this research is twofold: 1) to examine how genetic counseling effects the reproductive decisions of women with a known sickle hemoglobinopathy; 2) to determine the best time (i.e., preconception, prenatal, postnatal) to initiate the counseling process. The women in this study will be identified through three major sources: 1) the Tennessee Department of Health and Environment's newborn screening program, 2) prenatal clinics and 3) community mass screening. Specifically this project will: 1. Examine the differences in responses to reproductive decisions of women who receive counseling and women who do not receive counseling. 2. Examine the differences in reproductive decisions based upon the time counseling information is provided during the pre-conception, prenatal, postnatal periods. 3. Assess the retention of genetic counseling for the five year grant period. 4. Determine what factors impact upon reproductive decision making, i.e., cultural, religious. 5. Increase male participation in the counseling process and case management when a pregnancy or an affected newborn is involved.
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