Mission
To prevent morbidity and mortality among individuals and families with or at risk of genetic, congenital, and/or familial disorders, we want to provide quality screening, education and family-centered comprehensive services for the all Middle Eastern people.

Vision Organizational Goals

■ Assure access to genetic services.

■ Provide public health leadership in genetics.

■ Address ethical, legal and social issues including confidentiality and discrimination.

■ Advocate for policies to ensure provision of comprehensive integrated genetic services.

■ Promote efforts to increase professional and public awareness through education.

■ Review, incorporate and promote advances in genetic technology.

■ Communicate and disseminate information on emerging genetic issues.

■ Explore and advocate for methods of reimbursement for genetic services.


Members

Our group of counselors represents the following disciplines: clinical genetic service provider, laboratory genetic service providers, primary care providers, maternal fetal medicine providers, oncologist, ethicist, medical reimbursement representation, consumers and families affected by a genetic disorder, community representation, and others.

Counselors with specific expertise assist the people with Prenatal Screening and Diagnosis, Newborn Screening Programs and Pediatrics, Education, Evaluation, Adult Genetics and Family Advisory.


Adult Genetics

■ Provide recommendations on how to inform women, who have had a pregnancy with a neural tube defect (NTD), on the use of folic acid supplementation for future pregnancies.

■ Provide recommendation on how the data of the Birth Defects Registry can be used to better serve the public.

■ Develop criteria for the investigations of clusters of birth defects identified in the state.

■ Assess and provide recommendations on the use of MSAFP and ultrasound screening.


Evaluation

■ Develop evaluation measures to monitor data and data collection quality.

■ Provide recommendations for identifying the components of Middle East genetics programs and activities.

■ Quality assurance of genetic services.

■ Provide recommendations for epidemiological use data.

■ Provide recommendations for utilization of data for research needs/opportunities.


Prenatal Screening and Diagnosis


■ Provide recommendations for pre-symptomatic testing of adult onset genetic disorders such as breast and colon cancer, and mental health.

■ Assess and provide recommendations for the provision of services for adults with pediatric onset genetic disorders.


Family Advisory Committee

■ Family to Family Support

■ Barriers to care


Genetics Education Committee of UAE

■ Provide recommendations on the provision of formal clinical genetic education to the various institutions of learning, i.e., medical schools, nursing schools.

■ Provide recommendations regarding public awareness campaigns and health professional education.

■ Provide recommendations and promote the utilization of various educational tools, i.e., interactive video, pamphlets, e-mail, and web site.

■ Provide recommendations to ensure access and integration of genetic services into established systems of care.


Newborn Screening Programs and Pediatrics

■ Provide recommendations as requested on the addition of new tests to the screening battery.

■ Provide consultation on issues related to newborn screening programs as requested.


Public Health Policy

■ Review and report legislation related to genetics.

■ Provide recommendation on legislative issues related to birth defects and genetic disorders, i.e., genetic discrimination.

■ Provide recommendations on policy and service needs.

■ Collaborate with local, regional and national entities regarding activities on policy development related to genetics and public health.

■ Provide recommendations for assessing population needs.

■ Review and provide recommendations for clinical services statewide and address the special needs of rural communities (including the use of interactive video throughout the state).