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Informing patients about carrier screening for genetic diseases

Anat Mishori-Dery1, Ilana Shoham-Vardi, PhD, MPH1, and Rivka Carmi, MD2. (1) Dept. of Epidemiology and Health Services Evaluation, Ben-Gurion University of the Negev, P.O.B. 653, Beer-Sheva, 84105, Israel, 972-8-6512328, anatm@bgumail.bgu.ac.il, (2) Faculty of Health Sciences, Ben-Gurion University of the Negev, P.O.B. 653, Beer-Sheva, 84105, Israel

Background: Carrier testing for most genetic diseases in Israel is not covered by National Health Insurance (NHI), and informing patients about the tests has not yet been incorporated into routine prenatal care. As number of these tests is rapidly increasing the question arises as to the duty to inform patients of the tests. Objective: To compare care providers' opinions with that of patients Methods: The study was conducted in southern Israel. Participants were 596 women who gave birth to live infants at Soroka University Medical Center, and 351 health professionals (gynecologists, pediatricians, neonatologists, geneticists and MCH public health nurses) Patients were interviewed by phone using a structured questionnaire, 5-8 weeks postpartum. Providers filled out a structured self-administrated questionnaire, designed to parallel patients' questionnaire. Results: Most care providers (92.5% of gynecologists and 77.4% of MCH nurses) believe they are required to provide information regarding carrier testing. However, almost half (44.4%) of women, most of whom received their prenatal care from a gynecologist and/or an MCH nurse, never heard about these tests. Most providers (82.1%) believe all women should undergo a carrier test for Tai-Sachs which is covered by NHI, but only 40.5% believe women should undergo tests which are not covered by NHI. Conclusions: There is no congruence between care providers' asserted attitudes regarding informing women and women's actual knowledge. Possible reasons for this situation are: providers are reluctant to inform patients about test they donít consider necessary and/or patients do not fully understand the information provided by health care providers.

Learning Objectives:

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

Improving Maternal and Perinatal Health in the Context of Reproductive Health

The 132nd Annual Meeting (November 6-10, 2004) of APHA