Under the Genetics Services Research Unit of the SBRB, research is conducted into genetic counseling interventions that may improve practice or the achievement of desirable counseling outcomes. One avenue of this research is devoted to questions in prenatal genetic counseling. One study seeks to estimate the prevalence of ambivalence about undergoing diagnostic testing among women referred for prenatal genetic counseling, and the predictors and decisional consequences of such ambivalence. Women seen at six different U.S. prenatal clinics for genetic counseling at increased risk for carrying a fetus with trisomy 21 are being asked to complete a questionnaire on three occasions: prior to counseling; immediately after counseling, and later by telephone. These data will be used to describe the extent to which a sample of U.S. women referred for prenatal counseling based upon maternal age or results of a screening test are ambivalent about prenatal testing and might benefit from interventions aimed at improving the quality of decision-making.? While the overall goal of this study is to determine the extent to which women attending a prenatal genetics clinic appointment for genetic counseling are ambivalent toward undergoing prenatal diagnostic testing (amniocentesis or chorionic villus sampling), the specific study aims are:? 1. To describe women?s attitudes toward prenatal testing, including the extent to which they hold ambivalent thoughts or feelings toward undergoing testing. ? 2. To examine predictors of ambivalence.? 3. To determine the relationship between ambivalence, attitudes, ? intentions to undergo prenatal testing, test choice, and quality of the decision. ? A second pilot study is being conducted in conjunction with Positive Exposure, a non-profit organization, assessing the potential value of a photography and videographic intervention on self-image, self-concept and hopefulness among young adults with craniofacial conditions. If the intervention has durable positive outcomes for participants, concepts from the intervention will be considered for translation to other settings. ? A third study is being conducted by a genetic counseling graduate student looking at ambivalence towards undergoing prenatal diagnostic testing following infertility.? Another graduate student study involves interviewing individuals with visitble differences who were seen in a genetics clinic in the past five years. The intention of this study is to explore participation in efforts to education others about their condition and ultimately to inform how genetic counseling sessions are conducted.
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