The ultimate goal of the counseling program is to educate and support individuals regarding the significance and inheritance of the hemoglobinopathies and to ameliorate misconceptions through education of the professional and lay community. The intermediate objectives of the counseling program are to: aid individuals with hemoglobin diseases and their families to better understand and cope with their illness; counsel persons with hemoglobin traits so as to correct misconceptions and reduce anxiety; promote early identification of at-risk couples and facilitate informed decision-making regarding reproductive options; educate the professional and lay community through outreach activities, the Sickle Cell Educator/Counselor. Training and Certification Program, and the preparation of educational materials; and contribute to the understanding of the impact of hemoglobin diseases through research activities. As demonstrated in the Northern California Comprehensive Sickle Cell Center grant proposal and progress report, the needs of hemoglobinopathy patients are being effectively met by advanced diagnostic techniques and treatments, without genetic counselors providing on-going counseling to these patients and their families. Following the success of our cord blood screening program as a means of identifying infants with hemoglobin diseases, all infants in the state of California are now being screened for hemoglobinopathies. Our Center serves as the state reference laboratory and also provides the follow-up care, counseling and testing for infants identified with hemoglobin diseases as well as for the families of infants with hemoglobin traits in northern California. Prenatal screening, also through our testing center, has proven to be an effective means for identifying at-risk couples and more couples are utilizing prenatal diagnostic services. The challenge to counselors is how best to meet the needs of our ethnically diverse patient population in light of the advancements being made in the field. We propose to continue providing counseling services to families as described above, and to increase the efficacy of our counseling program with studies designed to: identify obstacles to the utilization of services; facilitate the further development of the single gene counseling model; assess cultural influences on the genetic counseling process; and enhance the development of counseling protocols to handle the complex counseling issues that arise when providing services to individuals who have hemoglobin variants and their families.
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