Using community based participatory approaches to provide genetics education

Individual and family knowledge and attitudes of genetic services and newborn screening (or genetic screening) is not well established. What do stakeholders know, when do they know it and how does it affect health care decision making? Does knowledge make a difference? Underserved and underrepresented families are coping with practical issues on a day to day basis. These practical issues often make it difficult for individuals and families to receive genetic services or participate in the development of educational materials. In particular, the practice, policy and ethical factors that affect decision making, including cost, access to care, current technology and the prevailing view that only those conditions that have an efficacious treatment, should be part of the screening panel should be considered in order to increase access to genetic services. Recognition of policy concerns and the dynamics receiving genetic services will be addressed.